Yale Daily News

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New Haven resident Richard Youins has been clean since 2010. 

After battling drug addiction for over two decades, he now serves as a peer mentor for others struggling with substance use disorder, often working directly with his neighbors and friends of friends as they navigate recovery. Because of the nature of his work and his personal experiences, he is no stranger to the horrors that substance use disorder can wreak on the lives of individuals and families, especially in communities of color like his own. 

At the same time, the drugs on the street today are different than they were when he battled addiction decades ago. More people are dying of overdoses, too.

“I find myself wondering when this shit is gonna end,” Youins said. “I don’t even do funerals no more, because I’ve been to so many.”

During the COVID-19 pandemic, people across the country grappled with reduced access to in-person health care, deteriorating mental and physical health and deepening racial inequities across society. With the rise of the deadly synthetic opioid fentanyl, overdoses skyrocketed across the board. But for Black and Latino people both in New Haven and throughout the country, the rise in deaths was even steeper.

Two months ago, Youins lost a longtime friend to a fatal drug overdose. He told the News that as a Black man in recovery, he carries the harsh realities of the rising overdoses in his community with him every day, often worrying whether a given conversation with a friend will be their last.

As a peer recovery mentor, he said he is also acutely aware of the social and structural barriers to treatment that have prevented people of color from getting the help they need, both historically and in the present. He feels exhausted as social services and programs in the community, often run by white people, fail to connect with people like his neighbors and family members. These inequities have exacerbated the racial disparities in overdoses, making the risk of dying even higher for Black and Latino people who have long been overlooked in conversations about the opioid crisis.

“It’s funny that the pandemic brought this to the forefront,” Youins said. “It’s been happening all along. It’s just that all of a sudden now, the white media and the white community are recognizing it.”

Deadlier drugs, rising overdoses and escalating disparities

In 2013, a potent new street drug hit the illicit substance trade, eventually flooding the national market. Fentanyl, a synthetic opioid primarily used to treat cancer patients, was easy to illegally manufacture and sold for a cheap price. It was also about 50 times more powerful than heroin, making it more profitable to drug traffickers.

Since fentanyl and its analogs are highly addictive, manufacturers often “lace’” its active ingredients into counterfeit opioids and substances like cocaine to boost buyers’ dependency.

“Prior to 2013, if law enforcement took samples of drugs off the street and they tested cocaine or crack or heroin, which was the primary opioid back then, they would find cocaine or crack or heroin,” said state drug intelligence officer Bobby Lawlor. “When we test a sample of opioids on the street today, what we see is that there’s fentanyl in there; there are fentanyl analogs in there; there’s Tramadol in there; And a lot of times, there’s also xylazine, which is an animal sedative, in there.”

Even tiny amounts of fentanyl added to powders, injectables and pills cost lives. The Drug Enforcement Agency estimates that three milligrams of fentanyl can potentially kill an average-sized adult male. Datahaven researcher Kelly Davila told the News that in 2012, “close to zero percent” of overdose deaths in New Haven and surrounding communities involved fentanyl. Eight years later, the drug was involved in about 84 percent of regional overdose deaths. 

According to a 2021 Datahaven study led by Davila, most overdose survivors in the region seemed to be unaware that fentanyl likely played a role in their overdoses. Only 6 percent of survivors surveyed stated they knew they had consumed the drug. New Haven resident Isabelle Firine, whose brother Cameron had long battled addiction before dying due to an overdose, told the News that her brother purchased what he believed were oxycontin pills in 2019. The one he took was pure fentanyl.

“He was dead before he even hit the ground,” Firine said.

Like other urban areas across the country, New Haven has grappled with far higher overdose rates compared to that of the nation as a whole. A March 2023 report produced by DataHaven, which collects statistics to report on regional wellbeing and equity, estimated the Elm City’s 2020-2021 overdose fatality rate to be 445 deaths per one million residents — over double that of the state of Connecticut and 67 percent greater than that of the country.

At the start of 2012, according to Datahaven’s 2023 Community Wellbeing Index, the rates of drug overdose deaths among Greater New Haven’s Black, Latino and white populations were nearly the same. Fatality rates among all groups rose throughout the rest of the decade after fentanyl was introduced, with deaths among white people often remaining higher. However, starting in late 2019 to early 2020, when fatal overdoses surged even higher across the board, the local Black community’s death rate rose at double the speed of that of white people.

[photo headline=”” description=”” caption=”Although drug overdose deaths rose throughout the Greater New Haven region in general, fatality rates for Black and Latino residents eclipsed those of white residents during the pandemic.” credit=”Courtesy of DataHaven” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/upclose_mv_CourtesyOfDataHaven.jpg” ALIGN=”full”]

In 2022, 133 people died of drug overdoses in the city of New Haven. 56 of the fatal overdose victims were Black, 31 were Hispanic and 45 were white. This breakdown shows deaths are skewed across the city’s ethnic communities: Black New Haveners make up about 33.9 percent of the city’s total population, but they comprised about 42 percent of the lives lost to overdoses that year.

Hurting communities and barriers to treatment

The News spoke to local addiction treatment experts and care workers who presented several social health determinants as explanations for the racial disparities in overdoses. 

Traci Norman, a program manager of Yale’s Addiction Treatment in the Black Community study, connected the disparities to other challenges that disproportionately affected Black people during and beyond the pandemic, including higher rates of underlying health issues, worsening mental health and civil unrest in response to structural racism and police brutality.

“Racism isn’t new… but seeing it in your face, seeing people getting murdered, hearing people being disproportionately impacted by COVID. And not knowing what’s going to happen tomorrow,” Norman said. “I think all of that compounding on one another definitely led to a lot of increased substance use, as well as relapses for some people, too.”

Former University chaplain Rev. Dr. Frederick J. Streets DIV ’75,  who works to support people of color in New Haven through addiction recovery, also emphasized an “explosion of racial animosity,” as well as the acute phase of the pandemic and political polarization, as stressors and sources of anxiety. These unique pressures and fears, Streets said, made many people turn toward self-medication. 

Depression, anxiety and other mental health problems surged across demographic groups during the pandemic. However, this rise did not impact all ethnic groups equally: according to the Datahaven report, Black and Latino individuals were 2.3 times and 1.6 times more likely to report feeling depressed than white people were, respectively.

“If you’re a person struggling with mental health or substance use history, now you’re isolated,” said treatment care worker Sylvia Cooper. “People are feeling like, ‘Am I gonna die? I have substance use, and I have health issues — it’s coming for me.’ So it really creates a hysteria of ‘what else is there left to do?’”

Beyond mental health stressors, physical health issues that disproportionately affect people of color were also exacerbated by the pandemic. COVID-19’s mortality rate among Black individuals was over double that of white people in the Greater New Haven region, according to the 2023 Datahaven report. Norman added that even though people of all racial backgrounds consume drugs and alcohol at similar rates, racial disparities regarding the incidence of other health complications caused a higher risk of overdose deaths for people of color.

“We typically have greater health challenges and health occurrences, underlying things such as hypertension rates, high cholesterol and diabetes, that also play a role in why we face greater mortality in regards to substances,” Norman explained. “I personally saw how black people were being disproportionately impacted by COVID-19.”

Local minority communities often see a lack of access to treatment services, especially as they face higher levels of economic inequality compared to white people. 

Assistant Professor of Psychiatry at the Yale School of Medicine Fabiola Arbelo Cruz said that barriers to care include a lack of physical proximity or transportation to treatment centers, high insurance costs, daily financial pressures and social stigma.

“If someone’s unemployed and with unstable housing, you give an appointment for a follow-up,” Arbelo Cruz explained. “But meeting the basic need of going to work and getting money might be a reason for them missing an appointment.”

Arbelo Cruz added that bed closures, long waitlists, limited walk-in appointments and reduced group therapy options also cut access to in-person addiction treatment centers. As these centers implemented social distancing regulations to protect patients from the spread of COVID-19, many of those struggling with substance use disorder — especially those who already faced barriers to in-person care —  also had issues accessing telehealth services. 

In a statement to the News, YSM Professor of Psychiatry Chyrell Bellamy also noted that Black and Latino people have less access to medication-assisted treatment for substance use disorder, which includes methadone and buprenorphine treatments that relieve withdrawal symptoms. 

According to one study conducted by JAMA Psychiatry, Black and Latino patients also tend to be prescribed MAT for shorter durations than white people do. Receiving MAT for an appropriate duration is often vital in patients’ survival — studies have shown that these medications may cut the overdose death rate in half among those struggling with opioid addictions, and receiving at least six months of treatment is associated with better recovery outcomes.

“We now have a very good treatment strategy for opioid use,”  Mark Costa, associate research scientist in psychiatry at the School of Medicine, told the News. “We have medication that is very helpful … But the way we offer these treatments is not impacting the Black and Latino community how it’s impacted the white community.”

The legacy of discrimination in clinical mental health and addiction treatment

Racial discrimination in the health care system has already long discouraged those of minority backgrounds from seeking treatment for substance use disorders, according to experts who spoke to the News. Datahaven’s 2023 CWI supports such claims — compared to 3 percent of white residents, 7 percent of Latino residents and 16 percent of Black residents in Greater New Haven reported that they had been discriminated against in the health care system. 

For Bridgett Williamson, who formerly battled substance use disorder and now works with those in recovery, the issue of racial discrimination and abuse in addiction treatment hits close to home. When she received methadone to treat her drug addiction in the 1980s and early 1990s, treatment workers said that one of her urine samples tested positive for drugs, even though Williamson maintains she did not consume any substances. She received an ultimatum from the criminal courts: be admitted to the state’s in-patient mental health treatment facility or go to prison for five years. 

When she entered the facility, staff members exerted control over what she could and couldn’t do. For instance, although they allowed white patients to step outside to smoke cigarettes or make trips to the store, they barred Williamson and other Black patients from doing the same. They told her they were afraid she wanted to step outside to purchase drugs, but they never raised this concern with the white patients — including those who Williamson said actually did bring drugs inside. 

Trapped on the third or fourth floor of the facility for over a month, Williamson’s mental and physical health deteriorated. She said she was forced to stay without any means of escape as she endured experiences that still traumatize her three decades later, including witnessing other patients harm themselves, finding mice in her bed and having her health and safety concerns constantly ignored by staff and doctors. 

“Caring and controlling is two different things,” Williamson said. “Do you think I trust the hospital? Hell no, I don’t even go. So that’s how they treat us people of color.”

Streets named a long history of suspicion toward traditional clinical care models among minorities that persists through the current crisis. Oftentimes, he told the News, people of color seeking help are cast as criminals and treated as “people who are problems” instead of people experiencing problems. 

Over 30 years after Williamson’s experience in the state facility, the state’s Department of Mental Health and Addiction services boasts a Health Disparities Initiative on its website. The page raises questions about a “culturally competent system of care” and asks readers to reflect on steps the Department has taken “toward developing culturally relevant programming.” 

At the same time, state mental health facilities collectively employ 70 police officers, many of whom show up to work armed. By having armed police officers on their premises, state mental health and addiction treatment centers may heighten the fear of seeking help among Black and Latino people in Greater New Haven, who were far more likely to report experiencing discrimination at the hands of the police in the Datahaven CWI. Only 45 percent of Black and 54 percent of Latino residents of Greater New Haven reported that they approved of the local police, as opposed to 76 percent of white residents. And although Black residents make up 16 percent of residents in Greater New Haven, they comprised 45 percent of drivers who were searched by police from 2018-2020.

The presence of police may also discourage people who have had previous experiences with the criminal justice system, Costa noted. The Yale-affiliated Connecticut Mental Health Center in New Haven, where Williamson was mandated to go decades ago, currently hosts a team of armed cops and features metal detectors at its entrance. 

Streets stressed that existing clinical models must prioritize hospitality toward minority patients in order to truly make them feel comfortable enough to receive medical care during a crisis. Clinical models, others added, must also become more accessible to all people struggling with addiction regardless of race or class.

“Here’s the dilemma: as you work and encourage people not to feel bad about feeling bad, not feeling bad about needing help, what happens when a person goes to a system that then treats them inhumane?’” Streets said. “It’s a catch-22.” 

Ethnic churches, multidimensional treatment and peer support

After coming to Connecticut for treatment, Bellamy’s cousin died from an overdose in August 2022. Bellamy told the News that she, her colleagues and other community members are motivated to work on “culturally responsive” treatment efforts because of their life experiences.

“​​I do the work because as a professor and as a person with my own lived experiences, we are all on a recovery journey either personally or with family, friends, neighbors, roommates, classmates, co-workers and colleagues,” Bellamy wrote to the News. “I know far too many people that hide their use of drugs because of the shame and fear of reaching out.”

Bellamy serves as the director of the Yale Program for Recovery and Health, or PRCH, which aims to foster inclusion and trust through culturally responsive approaches to care. These efforts often center around building connections between people in recovery and peer mentors of their own backgrounds who have been in recovery themselves. 

Williamson and Youins, who both work with PRCH, said their personal experiences with addiction drive their need to give back to others in the community through one-on-one mentoring. Williamson shared that sharing her experiences of substance use disorder and trauma helps demonstrate the realities of addiction in the long term, motivating people to continue recovery. It also helps combat the shame and stigma around substance use disorder on a more personal level, she said. 

“I stayed in the streets, I stayed in crackhouses, so this is why it’s so easy for me to let a person know that you don’t have to be ashamed for where you’ve been,” Williamson said. “I don’t care what you did three minutes ago. How can we move forward today, right now?”

Youins emphasized the importance of receiving care from people who “look like you,” especially as treatment and addiction recovery outreach efforts have often been led by white people “who have no connections in the community” and do not understand the social factors that influence substance use. He stressed that Black leadership has been crucial to bolstering recovery efforts in his community.

Created in 2017 by Bellamy and Assistant Professor Adjunct of Psychiatry Ayana Jordan, the Imani breakthrough project study was specifically designed to target people of color looking for recovery, though treatment for substance use is open to all. Using Black and Latino churches in the state, providers and care coordinators have tried to create a comfortable faith-based treatment environment while still being “non-proselytizing,” according to Streets, who helped facilitate the program at the Dixwell Avenue Congregational United Church of Christ.

“It’s a natural outgrowth of faith communities, as a matter of the basic principle and ethics of supporting the neighbor and assisting those who are more vulnerable,” Streets said. “It’s a public health approach, which combines the whole notion of empathy and an appreciation for our struggle as human beings.”

Dixwell UCC also promotes other community-centered approaches to combating the rise of substance use disorder and overdoses. The church has worked to educate congregation members about the the nature of substance use and the signs of potential suicide, as well as hosting trainings on administering Narcan and other harm reduction methods. Some congregation members have also stepped up to help lead the meditation sessions for those in addiction recovery through the Imani program.

“Those same people are advocates with their own families and in the wider community,” Streets observed. “If you replicate that by hundreds of churches or organizations throughout the community, you… advocate for a better atmosphere in which treatment can be offered and addiction could be understood.”

Gayle Brown began recovery treatment with Imani when she ran into a few counselors at Varick Memorial A.M.E. Zion Church about five years ago, right across the street from the Dixwell UCC. After the counselors asked her whether she knew anyone who had experienced substance use disorder, abuse, poverty or other hardship who would be interested in participating in a paid study, she boarded the bus and began spreading the word. Soon enough, she and dozens of other local residents gathered in Varick Memorial’s basement for their first session.

[photo headline=”” description=”” caption=”Shellina Toure, left, and Jeanette Reynolds show some of the Imani program materials they use at Varick Memorial A.M.E. Zion Church.” credit=”Megan Vaz, Contributing Photographer” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/upclose_mv_MeganVaz_ContributingPhotographer_02-scaled.jpg” ALIGN=”full”]

Cohorts of patients have gathered to receive weekly treatment through education on the harms of substances and racial disparities in overdoses, computer-based cognitive behavioral therapy, group support, a clinical treatment program staffed with doctors, one-on-one wellness coaching and self-reflection exercises. 

Shellina Toure, who currently facilitates the program at Varick Memorial with Sylvia Cooper, said that the self-reflection activities that happen during sessions are “intense.” Her facilitator training, which featured the same mindfulness strategies as the treatment sessions, had such a strong impact on her that it brought back her memories of almost becoming addicted to painkillers.

The church setting and group component, which Toure said becomes more comfortable as people build relationships over the course of several weeks, can help combat much of the distrust associated with traditional addiction treatment in hospitals. The room used for treatment also features a “Comfort Zone Agreement” on the wall, which Toure said instills ground rules and a culture of mutual respect during sessions. 

Sessions, Brown said, prioritize seeing one’s own experiences through the lives of others and understanding why they experience substance use disorder. As she continued to engage in self-reflection and open dialogue with others, Brown unearthed experiences from her traumatic childhood and her family’s history of addiction, reckoning with their influence on her life in the present.

“All of the people that was in this one program at that one time — I could fit into each one their shoes,” Brown said. “I’ve been through it, mentally abused, physically abused, sex abused. After all these many years, it started bringing up my childhood, what happened to me.”

The program also directly targets the social determinants that put minorities at a higher risk for fatal overdoses, aiming to provide people with basic needs to eliminate barriers to treatment access. Toure said she has personally helped patients find emergency housing, look for rental assistance programs, earn their high school diplomas and get their driver’s licenses.

[photo headline=”” description=”” caption=”Gayle Brown began attending recovery treatment at Varick Memorial A.M.E. Zion Church about five years ago.” credit=”Megan Vaz, Contributing Photographer” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/upclose_mv_MeganVaz_ContributingPhotographer_03.jpg” ALIGN=”right”]

Brown said that most people in the program are doing better now than they were when they first entered it. The program, she confirmed, has connected people with jobs at Yale and other employers, housing and financial help — setting them up for long-term wellness.

The Varick Memorial facilitators and Arbelo Cruz, who works as a provider in Latino churches hosting the program, added that the Imani program is especially effective at keeping patients in treatment because it does not impose specific goals onto them. For many, Arbelo Cruz attested, a move in the right direction might look like reducing use from eight bags of heroin per day to two, or going from three bottles of wine per day to one. There is no “friction” between what the patient wants and what the provider wants.

Brown attested to this, recalling “life-death situations” like the time where one of her fellow cohort members overdosed during a session. Immediately, the rest of the group sprang into action, calling emergency services and watching as responders “brought him back to life” with Narcan. They quickly welcomed him back with open arms.

“When one of the guys fell out with the fentanyl and came to us, we cried and we told him, ‘you slipped, but you get back up,’” Brown said.

Varick Memorial is located at 242 Dixwell Ave.

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Gabriella Gutierrez ’23 has just completed her senior thesis — a research project exploring behavior in different subtypes of schizophrenia — and is rapidly approaching commencement, when she will officially receive her Yale College degree in psychology.

About four and a half years ago, Gutierrez’s life looked very different. Then a high school senior in California, she wrote her Common Application essay about an intense “mental battle” that she experienced that year while playing competitive tennis.

During one particular championship match, the team’s first-ranked singles player chose to compete in the doubles round. Gutierrez — then the second-ranked singles player — had to fill her shoes, amounting to a “deeply stressful mental battle” as Gutierrez fought with herself to be able to perform. In the essay, Gutierrez called this moment a “turning point” in her mental health, noting that this one match marked tremendous personal growth for her.

Gutierrez is part of a growing pool of high school students who write their college essays about suffering through and overcoming mental health struggles, in an effort to craft personal testimonials that speak to strength of character. 

“There is a lot of pressure to write an admissions essay that [shows] you’ve grown from a certain experience, that you have finished growing, and you learn some big life lesson from it,” Gutierrez, who now is an advocate with the Yale Student Mental Health Association, told the News. “But the issue with mental health is that it’s reoccurring. It’s something that doesn’t go away.”

[photo headline=”” description=”” caption=”Gabriella Gutierrez wrote her college admissions essay about an intense “mental battle” that she experienced while playing competitive tennis in high school.” credit=”Courtesy of Gabriella Gutierrez” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/upclose_as_CourtesyofGabriellaGutierrez_02_Photo_of_Gabriella_Gutierrez.jpeg” link=”” ALIGN=”full”]

Highly selective universities like Yale consider an applicant’s potential to succeed within the college community. The Yale Office of Undergraduate Admissions states on its website that they seek out “students who will make the most of Yale and the most of their talents” and that they consider how a prospective Yalie would, if admitted, “engage the resources” that the University has to offer.

This framework of potential success at the University is further complicated by the persistent nature of mental illness that Gutierrez notes. For students with chronic mental health conditions, or whose past experiences may have yielded permanent psychological consequences, the question of what to disclose or not disclose in a college application is a complex one, as they seek to find the mix of poignant and palatable that will make an application successful.

Yale’s admissions office told the News that it does not discriminate against applications on the basis of any kind of health condition, including mental illness. In fact, Dean of Undergraduate Admissions and Financial Aid Jeremiah Quinlan wrote in a statement that an applicant’s choice to share details about any sort of health issue can provide further insight on challenging circumstances that a student has had to navigate. 

“In some instances, [these insights] can provide helpful context for reviewing other parts of the application, such as the transcript or activities list, but the admissions office does not advise students to either disclose or conceal personal health information in their applications,” Quinlan said. “That choice lies with each applicant and their own understanding of how they would like to present their candidacy to the admissions committee.”

But making that decision is exactly what can be challenging. 

Independent college counselor Christine Chu ’01, who was a Yale admissions officer from 2001 to 2003 and now works for New York-based educational consulting firm IvyWise, told the News that the students she advises are often concerned with how disclosures about mental health will be perceived. 

“How do you want to tell your story to show that you would thrive in a college community, that you can come and take advantage of everything that a school like Yale has to offer and be a contributing member as well?” Chu said. 

What it means to be a “contributing member” of the Yale community

Gutierrez told a story of growth in her college application, looking to show that she could — and ultimately did — arrive at Yale with skills that would enable her to bounce back from periods of mental stress.

But when journalist and software engineer Emi Nietfeld applied to Yale in 2009 as part of the early action program, with an application package that shared sensitive details of homelessness, residential psychiatric treatment and other trauma-related circumstances, she was rejected. 

Nietfeld’s high school guidance counselor called the University and relayed to Nietfeld that it did not look like she had “overcome enough,” Nietfeld told the News.

In the 2009 email from Nietfeld’s high school counselor, which the News obtained a copy of, her counselor wrote specifically that the list of “past issues [was] daunting” and that the readers did not perceive a “sense of reflection or [Nietfeld’s] ‘success story.’” 

[photo headline=”” description=”” caption=”Courtesy of Zoe Prinds-Flash” credit=”Emi Nietfeld discussed her experience with homelessness and psychiatric treatment in her Yale application, which was rejected.” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/upclose_as_CourtesyOfZoePrinds-Flash_Photo_of_Emi_Nietfeld.jpeg” link=”” ALIGN=”full”]

After removing any mention of her post-traumatic stress disorder, hospitalization and residential treatments, Nietfeld submitted a new application to schools other than Yale in the 2010 regular decision cycle and received vastly different outcomes.

“I really interpreted this as [meaning] that I cannot talk about mental health stuff, like I had to write the parts of my story that are going to look attractive and make me look like an overcomer,” Nietfeld said. “But I cannot mention this mental health stuff, even if I’m saying I’ve overcome it and I have people who can attest to the fact that I’m relatively stable and functioning. It was going to make me too much of a liability. So I ended up cutting every single mention of anything mental health-related, and focused my application on my parents struggles and being in foster care and being homeless.”

Ultimately, with her newly-sanitized application package, Nietfeld was admitted to Harvard University, the University of Pennsylvania and a slew of other highly selective colleges. She went on to matriculate at Harvard and graduated in 2015. 

Yale employs a system of holistic review. Under this model, mental health is — like all other elements of an application package — one factor about an applicant, not their whole story. In his statement to the News, Quinlan wrote that admissions officers review applications from students who disclose information about their mental health status the same way as they review all other applications.  

But the admissions process is a black box. It is impossible to know whether Nietfeld would have definitively gotten into Yale with the same sanitized application that she submitted to Harvard, UPenn and the other selective schools to which she was admitted. Plenty of students submit the same application to similarly selective universities and end up with vastly different verdicts — such is the nature of schools with admissions rates that lie under 5 percent and are continually decreasing.

In Nietfeld’s admissions cycle, 25,869 students applied to Yale. 23,929 were rejected. 

But Nietfeld finds this line of argumentation “convenient” and worries that it may enable “systemic discrimination” against mentally ill applicants to persist, whether at Yale or other college campuses. 

“I do have empathy for admissions officers, and I think it’s a really tough job, and, obviously, most people are not going to get in,” Nietfeld said. “But I also think that mental health impacts people from different backgrounds so differently, and if colleges are not really careful, they will end up unfairly rejecting applicants with fewer advantages since that’s one of [the] ways that mental health manifests.”

[photo headline=”” description=”” caption=”Admissions officers review applications from students who disclose information about their mental health status the same way as they review all other applications, Dean of Undergraduate Admissions and Financial Aid Jeremiah Quinlan said.” credit=”Tim Tai, Photography Editor” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/stock_campus_TimTai_61.jpeg” link=”” ALIGN=”full”]

What happens after arriving on campus?

Some applicants hope that the decision to disclose or not to disclose their mental health struggles will conclude after receiving an offer of admission — that matriculation will resolve consequences wrought by the pressure to gain admission to a selective university as well as the potential stigmas attached to discussing mental health challenges in their application.

For Gutierrez, this was true. The story she recounted in her college admissions essay was one of genuine growth, and she told the News her mental health has improved tremendously since when she applied to the University. 

“I had full-on gotten screamed at by some of the parents in tennis during my matches, and there was all this pressure in these moments, but eventually, I learned to block it all out,” Gutierrez told the News. “Now, with college, I’m very happy. … Everything that I learned back from that tennis match in high school [made me] really grow as a person and learn how to manage stress and high-pressure situations.”

For Nietfeld, though, matriculating to Harvard came nowhere close to solving her mental health struggles. 

Nietfeld told the News that while she was an undergraduate, she felt “overwhelming” pressure to model a “perfect person” who had not been marred by trauma and mental illness — a pressure intensified by her belief that she would not have been admitted had she told her full story in her application.

“It’s kind of like being asked to lie, or maybe not to lie, but to tell a very, very narrow version of the truth,” Nietfeld said. “And [within] that there’s that message of, ‘You are not acceptable unless you are this healed person or a person who was never sick at all.’”

[photo headline=”” description=”” caption=”“Symptoms”” credit=”Jessai Flores, Illustrations Editor” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/Jessai-Flores-Symptoms-Illustrations-Editor.png” link=”” ALIGN=”full”]

At the end of November, mental health advocacy group Elis for Rachael and two current undergraduates sued the University on the basis of alleged discrimination against students with mental illnesses. The plaintiffs argued specifically that Yale’s previous policies around medical withdrawal and reinstatement placed undue burden on mentally ill students, giving them no other choice than to withdraw from the University if faced with a serious bout of mental illness and placing unreasonable requirements on those seeking reinstatement.

Representatives of Eli for Rachael declined to comment due to ongoing legal negotiations. 

Since the lawsuit was filed, the University updated its reinstatement policies dramatically, changing the title of “medical withdrawal” to “medical leave of absence” to lessen the sense of permanence attached to choosing to take semesters off from school and relaxing the reinstatement requirements. 

While reinstatement policies at the University are handled separately from the general undergraduate admissions process, the themes that underscore class-action lawsuits like the one currently pending against Yale and a similar suit that hit Stanford University in 2018 can reinforce feelings of exclusion or fears of retribution like those that Nietfeld experienced. 

These feelings can bleed into the application process, prompting applicants to further agonize over how to distill their personal experiences into an application portfolio that they can successfully market to selective universities. And they also can make it harder to ask for help upon matriculation.

“I felt like colleges wanted somebody who had been through these bad things, but they didn’t want somebody who had been affected by them,” Nietfeld said. “I tried to get counseling, but I was too afraid to say, ‘Hey, here’s what’s going on for me,’ because I worried that my admission would be rescinded or I was going to get in trouble.”

A Yale-affiliated chaplain with experience in New Haven mental health programs wrote in the email to the News that due to stigma surrounding mental health, she would not advise students to disclose diagnosis of a chronic mental illness — like Nietfeld’s post-traumatic stress disorder — unless they could meaningfully show how they had dealt with the condition.

However, the chaplain added that the context of disclosure changes after matriculation, when seeking help is “one of the many responsibilities of adulthood.”

Nietfeld wishes she had been better able to understand that distinction while an undergraduate.

“I just wish that I had realized that my application was not a promise, that it was not a binding commitment, but it was the way in the door,” Nietfeld said. “And then once I was in college, I could talk about things as freely as I wanted. “

[photo headline=”” description=”” caption=”The high-intensity environment at Yale and peer institutions can exacerbate mental stressors.” credit=”Tim Tai, Photography Editor” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/stock_campus_TimTai_41.jpeg” link=”” ALIGN=”full”]

The way forward

Nietfeld applied to college in the 2009-2010 cycle, about nine years before Gutierrez would apply and 13 before the incoming first-year class. 

Last December, she wrote an opinion column for the New York Times about erasing her mental illness from her college application. Nietfeld told the News that she wrote the piece, which includes interviews with 11 other students and several college counselors, in part because she was curious about how much had changed in the admissions process since she was rejected from Yale. 

Her verdict? Not much.

“Even though Gen Z is much more open with discussing mental health, if anything, colleges are more afraid now,” Nietfeld told the News. “And in part, it’s because there aren’t a lot of resources. There’s a nationwide therapist shortage that has made its way onto campus. Colleges generally … [think], ‘If I accept this student, I have to be able to take care of them,’ and, in part, this is what people demand of colleges; it’s their substitute parents. And that can turn into basically discrimination, where they don’t want to take people because they don’t think they’ll be able to meet your needs.”

The college mental health crisis, of course, extends beyond the University. A 2014 survey by the Association for University and College Counseling Center Directors found that about half of students served at college counseling centers around the country had attended counseling for mental health concerns. A 2019 research paper out of Harvard Medical School found that suicide rates are currently at their highest levels in a century, with the adolescent age group particularly at risk. In his State of the Union speech this February, United States President Joe Biden named rising rates of anxiety and depression among teenagers as a top concern for the nation. 

The high-intensity environment that characterizes Yale and peer institutions can further exacerbate mental stressors. 

Emerging research finds that adolescents enrolled at high-achieving schools, such as those in the Ivy League, can suffer significantly higher rates of anxiety, depression, substance abuse and delinquent behaviors — at least two to three times the national average. 

[pullquote credit=”Emi Nietfeld” align=”full”]I felt like colleges wanted somebody who had been through these bad things, but they didn’t want somebody who had been affected by them[/pullquote]

But the impact of the Ivy League on youth mental health comes into play long before matriculation, as the sociocultural value placed on Ivy League admission — and fear of disclosing mental health status in an application — can contribute to stigma around mental illness, Nietfeld noted. 

“In our society as a whole, getting into an Ivy League college is one of the most impressive things that you can do,” she told the News. “So if you obscure your mental health, and you can get into an Ivy League, that is a very powerful incentive, telling you that is the right thing to do. You should not talk about it, you shouldn’t be honest about it.”

Dean of Yale College Pericles Lewis spoke to the News about the general stress that exists within the current culture, especially for young people applying to college.

Low admissions rates, Lewis said, contribute to the problem. 

“One of the things I am looking for is ways to reduce stress and encourage mental health and, more broadly, emotional well-being, and I think we can look at admissions as part of that broader thing,” Lewis said. “Obviously it’s stressful when only 4.35 [percent] of the students are admitted, but maybe taking a little pressure off of that and remind[ing] people that most of the other 95 percent of students will get into excellent colleges somewhere [would] take off some of the pressure related to the whole process.” 

Nietfeld and Gutierrez both agree that the admissions process is not solely to blame for the biases and discrimination that surround mental illness — “the whole world,” Gutierrez said, is stigmatized against mental health.

According to Gutierrez, a long-term solution must lie with broader destigmatization that goes beyond admissions on its own, especially because mental health affects everyone.

“Treatment should not be stigmatized, and it should be accessible,” Gutierrez said. “I think that those are probably the first steps — the major steps, at least — in addressing these types of issues and normalizing discussion around mental health. It’s just something that you experience, something that all of us experience. Everybody, at least once in their life, has experienced some sort of mental health struggle.”

Yale College admitted 2,275 of its 52,250 applicants to the class of 2027. 

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Morgan Baker ’22 was diagnosed with COVID-19 in the summer of 2021, after spending a gap year traveling with the Whiffenpoofs.

Once she returned to campus for her senior year, Baker began to experience brain fog and was unable to focus for long periods of time 

“Everything was just hard for no reason,” Baker told the News. 

Facing a myriad of symptoms, Baker spent months being questioned by doctors who discounted her, but she was eventually diagnosed with “post-COVID-19 condition unspecified” — otherwise known as long COVID. 

Baker also received a diagnosis for further conditions often associated with long COVID-19 including dysautonomia and more specifically postural orthostatic tachycardia, or POTS, the most common form of dysautonomia. Dysautonomia involves dysfunction in involuntary nervous system functions, with the primary symptom of POTS being an increased heart rate while standing. These diagnoses came after months of neurologist and cardiologist visits in multiple cities. 

Long COVID though a relatively new chronic illness, affects 11 percent of adults who have been diagnosed with COVID-19.  In addition to dysautonomia, long COVID can result in a variety of conditions including autoimmune diseases and chronic fatigue syndrome. 

According to Akiko Iwasaki, a professor of immunobiology at Yale who researches long COVID, it is part of a group of chronic illnesses known as post acute infection syndromes which have been largely ignored and lack strong diagnostic measures. In addition to dysautonomia, long COVID can come with a host of other chronic health problems including neuropathy, a pain near the skin, and neurocognitive, and even psychiatric conditions.  

Baker’s experience — unable to identify her condition early on, feeling mocked and questioned by doctors and gaslighting herself — speaks to a broader experience of those with chronic illnesses which are often rare or poorly understood. 

Chronic illnesses are the leading cause of death and disability in the United States and are often multi-systemic, spanning different systems of the body and requiring coordinated care — a form of healthcare where specialists across disciplines work together in collaboration, often involving a single point person who works with the specialists. However, given the rising specialization of medicine, it is often hard for those with chronic illnesses to find coordinated care. This difficulty navigating care, coupled with the lack of full scientific understanding of many chronic illnesses, creates a process in which many suffer for years without a diagnosis.  

The News spoke with eight Yale students who have been diagnosed with chronic illnesses, many of whom echoed sentiments like Baker’s. They too described struggling to find answers, often being questioned or discounted by doctors. All of them sought care at Yale Health, but many were forced to find care elsewhere, some even taking medical leave to obtain it. 

Yale is the only Ivy League institution that is a healthcare maintenance organization, rather than a preferred provider organization. This distinction proves critical for many students, but especially those with rare or complex conditions that require highly specialized care across numerous medical areas, as it limits the care students can receive by requiring referrals to all come from Yale Health and limiting where students who are on Yale’s insurance plans can even receive care. 

With this model, not only do students report an inability to find specialized care within the limited care Yale Health offers and difficulty obtaining referrals, but students also expressed concern with a lack of communication across specialties at Yale, making it hard to receive clear diagnoses. 

Megan O’Rourke ’97, the editor of the Yale Review and the author of “The Invisible Kingdom: Navigating Chronic Illness” — a book that explores her own experience with an autoimmune disease and how the medical framework needs to be restructured — emphasized that though there is variance among chronic illnesses, specialized care without coordination cannot work for those with complex chronic illnesses. 

“One thing that people don’t understand is that it’s one thing to be suffering with a disease that is really making you suffer, and it’s totally another to be suffering in a way that is invisible to those around you and that is invalidated,” O’Rourke said. “In my experience, it was the second thing that almost killed me.” 

“The edges of medical knowledge”: The lack of knowledge of chronic illnesses and trust in patients

In December 2022, Baker saw a cardiologist at home in Buffalo while determining if she had POTS. The doctor mocked her and discounted her symptoms, as well as the validity of POTS itself, telling her she was seeking care merely because she “liked being the patient.” 

“‘You’re young,’” Baker said her cardiologist told her. “‘You’re a smart girl. If you read the real literature, there’s not much behind POTS.’” 

She added that the doctor “put POTS in air quotes” when he spoke the name of the condition. 

After telling her that her results for the tilt table test — a test which helps diagnose POTS — were “unremarkable,” he said he understood this was not the news she was looking for. 

However, while the cardiologist pointed to his computer when he described these “unremarkable results,” Baker ended up being positive for neurocardiogenic syncope on the test, an indicator of POTS, which she did not find out until much later when given the results. 

While Baker eventually found a separate cardiologist who formally diagnosed her with POTS, this experience came after Baker had her symptoms dismissed by numerous doctors, including one doctor at Cornell Scott Hill Health Center who Baker said something to the effect of “wait and see” in the winter of her senior year. 

With the doctors Baker saw through Yale New Haven health services who she saw during her senior year, she said it was a more implied “wait and see” where they did not make it seem possible she would remain sick two years later. 

O’Rourke said this questioning and invalidation of symptoms contributed to a feeling of invisibility, and she classified any instance where doctors fail to take the testimony of a patient seriously as an “act of harm.”

This harm, O’Rourke said, often comes from a lack of understanding of chronic conditions, which she believes needs to be solved through reworking of medical curricula and training for general practitioners. 

Since being diagnosed with POTS, Baker has received numerous life-altering medications to treat her symptoms. However, she said her experience navigating care has taught her that she — and others with rare or chronic illnesses — must be informed and “slicker” when heading into a doctor’s office, conducting prior research and essentially diagnosing herself before she walks in the door. 

Dianna Garzon ’24, who transferred to Yale last year, began experiencing symptoms of endometriosis a month before she turned 18. Like Baker, her symptoms were questioned early on. While missing a week of classes at a time in high school due to her pain, Garzon said doctors always initially told her that her symptoms were only cramps, and that she would be fine if she took Tylenol. 

“It’s not only the pain of the episode, but it is so draining, physically and mentally, that I am not functioning for the rest of the week,” Garzon said. 

[photo headline=”” description=”” caption=”Dianna Garzon was unable to transfer her birth control prescription from home to Yale Health.” credit=”Yash Roy, Contributing Photographer” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/upclose_sc_YashRoy_ContributingPhotographer_03-scaled.jpg” ALIGN=”full”]

Garzon’s episodes begin with a “moment of panic” at the start of her period, she said. First, she grows lightheaded, then feels an unexplainable level of pain in her lower abdomen, causing her to lose vision — her vision even turned blue at one point — as well as her hearing and the ability to move. 

After finally seeing a gynecologist, Garzon was automatically put on birth control, which she said helped her symptoms initially. After blood tests and ultrasounds with normal results, Garzon said endometriosis was only mentioned when her doctors offered her a medication typically used to treat the condition. 

In April of last year, Garzon ran out of birth control. Attempting to transfer her prescription from home to Yale Health, she was told that would be impossible because of how it would cross state lines. Instead, Garzon called her primary care provider from home to mail her prescription to a pharmacy in New Haven. 

However, the pharmacy in New Haven was unable to fill the prescription, and Garzon, left without medication, watched her symptoms worsen until she finally had to be hospitalized at Yale Health. Although Garzon said she had a positive experience with Yale Health overall, she was once told by a provider at Yale Health that “hormones do not affect anything.” 

In October, Garzon was finally diagnosed with endometriosis while seeing a gynecologist at home. Following her graduation in December, Garzon hopes to get surgical confirmation, as endometriosis requires a laparoscopy for the formal diagnosis. 

The diagnosis also came after Garzon had an explorative laparoscopic and gallbladder surgery in December 2019 to examine her ovaries. However, while her ovaries looked normal in the surgery, the doctor who later diagnosed her with endometriosis confirmed that the condition could impact various parts of the body outside of the ovaries. Because the surgery had normal results, though, her doctors at the time did not express concern that she may have endometriosis. 

O’Rourke emphasized the need to fill these gaps of knowledge and bring awareness of complex chronic illness into every interaction. 

“Medical providers need to start listening to patients, start believing in the testimonies of patients, start being aware of edges of medical knowledge and actually bring that space into the exam room,” O’Rourke said. “Even if a patient doesn’t have clear test results, there’s some awareness that they may indeed have one of these complex chronic illnesses, especially if their symptoms fit into that profile.” 

Despite finding care at home in Rochester and Buffalo, Baker remains concerned about what the care would have looked like if she had continued seeking treatment at Yale. 

“​​I never ended up getting treatment from Yale Health or Yale New Haven [Hospital], because I found it elsewhere first,” Baker said. “I wonder what people are able to access when they really try and dig in.” 

“Recipe for disaster”: Students struggle finding care through Yale Health

Veronika Denner ’24 began experiencing symptoms of endometriosis at age 18. Doctors at Yale and in her home country of Austria told her that her pain was normal, but after three years, it became unbearable, making it difficult for her to focus on anything besides her agony. 

Initially seeking acute care at Yale Health, Denner was met with misunderstanding about her condition. She was initially referred to gastrointestinal and urology specialists due to her urinary and digestive problems, but the specialists ruled out endometriosis because her symptoms were unrelated to her menstrual cycle.

This problem, which Denner attributes to a lack of dialogue between disciplines, is rooted in a misunderstanding that endometriosis only affects the uterus, rather than the whole body. 

Denner’s experience reflects a larger problem in the structure of healthcare overall which particularly impacts those with chronic illnesses, who often face medical issues spanning numerous specialties.

“The current structure we have, in which coordinated care is hard to come by and the patient is often left doing a lot of the work of connecting specialists, really doesn’t work for patients with complex chronic illnesses that impact many systems,” O’Rourke told the News. “They’re the ones left doing all the coordinating. They spend hours or days, weeks, months, years, trying to get their specialists to communicate.”

Denner also explained how the misconceptions she faced among her care providers reflect a gap in education in medical school where doctors are left to educate themselves about overlooked conditions like endometriosis. 

Unable to find care at Yale while facing debilitating pain, Denner went on medical leave in March 2020,  returning home to Austria before coming back to campus this January. 

“I was in so much pain that I couldn’t function at all,” Denner said. “No painkillers were working…Yale did not help me and did not even think I had endometriosis. They just gaslighted me and then I was forced to go back home.”

Denner clarified that while she was not formally kicked out, she was not only unable to find adequate care through Yale Health, but her Head of College also denied her request to get funds for outside care.  

Without care, Denner said she felt as if Yale saw her as a “burden” due to her medical problems. 

“I was in so much pain that I thought I was going to die, and I was in so much pain that I could not focus on classes at all,” Denner said.

Denner went on leave prior to the recent changes in medical leave, leaving her blocked from her NetID account and all email communication from Yale — an experience she described as “dehumanizing.” 

After receiving an inadequate laparoscopy in Austria, Denner had to travel to Romania to receive a formal endometriosis diagnosis. 

“I couldn’t even get help at this University,” Denner said. “I couldn’t even get help in my own country.” 

[photo headline=”” description=”” caption=”Veronika Denner had to take medical leave to obtain a diagnosis for endometriosis.” credit=”Yash Roy, Contributing Photographer” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/upclose_sc_YashRoy_ContributingPhotographer_02-scaled.jpg” ALIGN=”full”]

Given these negative experiences, Denner said she now avoids Yale Health. Until getting care from a specialist in Romania, Denner was questioned by doctors who often seemed to know less than her about her condition — leaving her stuck in a situation where she had to choose between speaking up, which led to facing misogyny and being called arrogant or dramatic, and escalating pain.

“I chose the first option, but it caused a lot of backlash,” Denner said. “For two and half years I chose the latter option [which] was so bad it was unbearable.” 

Arden Parrish ’25, who was diagnosed with Type 1 diabetes at age seven, initially booked an appointment with his assigned primary care provider when he arrived at Yale. However, he soon grew frustrated with the lack of personalized care available through Yale Health and opted to keep most of his care with his medical team at home in Chicago. 

At Yale Health, Parrish’s primary care provider was open about the fact that he may not be able to help him due to his complex medical needs, but offered to refer him to an endocrinologist — a process he said could take a few months. 

“It ended up being kind of a waste of time and also was frustrating because it made me if anything less confident in the system rather than establishing trust,” Parrish said. “It let me know that if I did have a serious problem, I didn’t really have anyone there who would know how to help me.”

Later, when Parrish was hospitalized at Yale Health after contracting a virus which influenced his blood sugar levels, he had to correct care providers who did not understand the mechanics of Type 1 diabetes, confusing it with Type 2 diabetes. At Yale Health, doctors automatically assumed his blood sugar was high, insisting on ketone testing which he knew he did not need based on his blood sugar levels which were within his normal range. 

Given these experiences, Parrish explained there have been multiple times he should have gone to acute care when dealing with bad blood sugar or a fibroid flare up, but usually attempts to“wait it out” and not go to Yale Health, rather than go through the exhausting process of self advocacy he anticipated. 

“It doesn’t feel worth it and it almost feels a little scary putting my health in the hands of people who don’t know me and don’t necessarily have the time or the inclination to learn everything about my health,” Parrish said.

Parrish’s experience of not being able to find specialized care at Yale Health is not an isolated one. 

In conversations with the News, students with chronic illnesses expressed frustration with the limited care offered through Yale Health and the roadblocks to getting referrals. These limits disproportionately impact students with chronic illnesses, particularly those who do not have private insurance — a problem felt especially by first-generation, low-income students and graduate students without their own private insurance.

As a healthcare maintenance organization, or HMO, Yale runs on a structure which offers a local network of doctors or hospitals and requires a primary care provider at Yale Health to coordinate care. The alternative, a preferred provider organization, or PPO, allows for out-of-network coverage, but often has greater costs. 

At Yale, all students receive Basic Student Health services, which covers Student Health, Athletic Medicine, Gynecology, Acute Care, Mental Health and Counseling, Laboratory and Inpatient Nutrition. However, the University also offers a Yale Health’ Hospitalization/Specialty Care Coverage plan which  includes a host of additional benefits. To opt -out of the Hospitalization/Specialty Care Coverage plan, students must show proof of insurance. The cost of this plan, $1,378, is covered for those with full financial aid. 

In a statement to the News,  Yale Health Chief Operating Officer Peter Steere wrote that the students who receive care through Yale Health Hospitalization/Specialty Care Coverage plan receive care and services from over a dozen specialty care areas at Yale Health, but can receive referrals to specialists at Yale Medicine and Yale New Haven Health Systems which includes three acute settings, as well as services referred to by Yale Health. Hospitalization and Specialty Care does provide acute and emergency care when students are away from campus.

Currently, per Yale Health’s statement to the News, 3,227 Yale College students and 6,432 graduate and professional students are currently covered by Yale Health Hospitalization/Specialty Care Coverage.

“The Hospitalization/Specialty Care Coverage plan provides students with access to top-rated Yale providers who offer the best possible care to our students, faculty, and staff. Yale Health’s unique programs and services afford students access to a comprehensive array of specialties,” the statement reads. 

This structure makes it difficult to obtain specialized care, causing many with complex and poorly understood conditions to hit a roadblock in their search for treatment.

Joaquin Lara Midkiff ’23, the former president of Disability Empowerment for Yale, who has numerous diagnosed chronic conditions, told the News these roadblocks reduce the amount of agency students have in their healthcare choices. 

“If I have an emergent health problem that is kind of out of left field for a lot of folks who are practitioners, then I will not be able to get a lot of help from them, but then they’ll refer me to a specialist within the system,” Lara Midkiff said. “Yale has amazing physicians and they have really, really incredible practitioners but there will likely come a point where I will pretty rapidly exhaust the clinician resources that I have relevant to myself as a patient.”

O’Rourke said Yale Health’s coverage through Hospitalization/Specialty Care is “not an option with [her]” because of how it limits her from seeing specialists without layers of referrals.

She added that Yale Health’s system, which many students cannot opt out of, is not set up to support students with complex chronic illnesses. 

“We need to radically reform healthcare and how we think about it,” O’Rourke told the News. “This is absolutely not designed to give those students good care, and I feel really concerned about that because they’re coming to a higher pressure situation that might exacerbate symptoms and find themselves with less access to the long term integrated support they need than ever before, so that is a recipe for disaster.”

[photo headline=”” description=”” caption=”Yale Health’s HMO structure makes it harder for students with chronic illnesses to obtain specialized care.” credit=”Tim Tai, Photography Editor” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/upclose_sc_TimTai_PhotographyEditor_02.jpg” ALIGN=”full”]

When students cannot find a provider at Yale who can help them and may not be able to afford an external provider, this difficulty seeking care compounds with other difficulties of being a student with disabilities. 

Maddy Corson ’26 was diagnosed with idiopathic subglottic stenosis — a condition that involves the narrowing of the trachea, thus limiting breathing — the day after she was accepted to Yale. This diagnosis came after over two years of doctors not taking Corson’s initial worries seriously. 

After finally finding a specialist who diagnosed her, it was discovered that 70 percent of Corson’s trachea was blocked. 

Arriving at Yale, Corson, who is a staff writer for the News, received Yale Specialty/Hospitalization coverage as a student on full financial aid. Corson hoped to receive a referral from Yale Health to a doctor in Boston who is a specialist on her condition; while at home in Maine, she relies on MaineCare, a Medicaid program that only covers in-state care. 

However, Corson was denied the referral as the specialist was out of network, which her primary care provider at Yale had warned her would happen. While Corson said she considered writing an appeal, she does not know how she could practically do so, especially while dealing with academic stress. 

The lack of coverage eventually led to a “battle” between MaineCare and Yale Health as Corson tried to get one of the systems to cover her specialist in Boston. MaineCare eventually agreed to cover the fees. 

Given that the specialist in Boston is the only who can treat her condition, Corson said she remains concerned by the thought of losing coverage through MaineCare. She said it is a “looming fear” that she will be left to seek care at Yale Health, which has “extremely limited services.”

Additionally, for those with conditions which require a host of specialists, the transition to establish a whole new care team can be difficult in and of itself due to the need for personalized and coordinated care. 

“Because our needs tend to be so individualized, transitioning to a new care team is scary for us,” Parrish said. “Because it took a long time to learn my condition, it takes a doctor a long time to learn to manage my needs.”

However, the HMO model also makes it difficult for students to access care quickly, as it requires a referral from Yale Health to even see doctors at Yale New Haven. 

The limitations and difficulties finding care, though, not only reflect the structure of Yale Health, but also relate to broader limitations on the structures of insurance coverage across state lines and the nature of dealing with poorly understood chronic conditions. 

“It can be overwhelming,” Lara Midkiff told the News. “Yale’s inability to take seriously the transition to a PPO exacerbates and complicates the factors involved in having a disability on campus.” 

Even in a PPO model, Lara Midkiff explained, finding care can become limited by what insurance plans cover across state lines. 

O’Rourke also said it is not up to just Yale to fix these problems, as the lack of access to care comes down to a reimagining of insurance and a complex coordination of medical knowledge. 

“We need a system that doesn’t mean everytime we change jobs, we have a new set of health insurance and that means we need new doctors,” O’Rourke said. “That is why it took me 15 years to get a diagnosis.” 

Garzon, similar to O’Rourke, identified the problems seeking care as not a specific problem of Yale Health but a “global one,” due to the fact that there are only a few doctors in the world who specialize in endometriosis. Therefore, Garzon does not expect anyone at Yale Health to specialize in endometriosis, but said she still feels there should be someone who does. 

Grad students face difficulty accessing specialized care 

The problems with Yale’s HMO model are also exacerbated for graduate students, many of whom are above the age of 26 and cannot remain on a parent’s insurance. 

One first-year medical student, who asked to remain anonymous out of professional concerns, felt sick for the entirety of her sophomore year of college. Yet, she was not diagnosed with Type 1 diabetes until she was sent to the emergency room with diabetic ketoacidosis — a condition that can occur in those with type one whose bodies cannot produce insulin — back at home in Canada. 

“Why did it take me landing [in] the ICU, nearly dying, going through secondary health problems to get a diagnosis?” the student said. 

Type one diabetes, as the student described, was easy to hide in her undergraduate years most of the time, but at points it could become “salient and urgent.” 

She also characterized type one as an “invisible illness” and a “24/7 job” which carries a burden on a daily basis, leading to self doubt, especially as a medical student thinking about what specialties she could go into in the future. 

“I’m constantly chasing a high blood sugar and trying to get it down and then I overcorrect and suddenly have to get a low blood sugar up and it’s cycling on and on and on,” the student said. “That takes time away and energy from things that I have to do or want to do.” 

While she said she has grown accustomed to advocating for herself with Type 1 diabetes, her doctors continued to discount her symptoms. 

If they had done one finger prick test for glucose, she said they would have known her glucose levels were high.

Coming to Yale, the student said she was very confused about the structure of the Yale New Haven Health System as compared to Yale Health. Her doctors from her undergraduate college sent a referral to an endocrinologist at Yale New Haven Hospital, but while adjusting to Yale, she said she needed to see an endocrinologist sooner than the six-month wait time for an appointment at the hospital.

She later received a cost estimate for the appointment, and it was not until then, after having called Yale New Haven Hospital multiple times to obtain an earlier appointment, that she learned that she had to go to Yale Health first in order for the appointment to be covered. 

[photo headline=”” description=”” caption=”Some students have struggled with long wait times to see specialists at Yale New Haven Hospital.” credit=”Tim Tai, Photo Editor” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/ynhh_stock_TimTai_PhotographyEditor_02.jpg” ALIGN=”full”]

While the student said her experience at Yale Health has been pleasant overall, she wished she would have access to more specialized care. 

“Sometimes I wish I had the option to play the field a bit more and see if there’s a better fit for me,” the student said. 

The student also added that the restrictions imposed by the HMO model are a larger consideration  for graduate students. 

Starting medical school last fall, the student said her experience of Type 1 diabetes completely changed due to the day-to-day activities involved in being a medical school student, whereas it was easier as an undergraduate to step out of class and take care of her needs. 

“I think it’s super ironic that medicine is ostensibly for the purpose of making people better and keeping people healthy and here we are, seriously damaging our trainees and attendings’ health and well being,” the student said. “It doesn’t matter whether or not you live with a chronic illness. The training and the culture isn’t great for our health.”

Rose Bender ’19 MED ’27, who is diagnosed with hemophilia and ulcerative colitis, recently switched off of her parents’ insurance. Bender said her experience with Yale Health included long wait times and difficulty accessing specialists. 

This year, Bender said this particularly became a problem when she had a flare up of ulcerative colitis in August, which she said often comes with stress or major life changes. 

She was originally referred to a gastrointestinal doctor, or GI, at Yale Health through her primary care provider, but then that GI referred her to a specialist for Crohn’s disease and colitis at Yale New Haven, where she could not get an appointment until January, forcing her to get steroids from her primary care provider. 

“The long wait times were really frustrating,” Bender said. 

“Hoops to jump through”: The search for academic accommodations

Student Accessibility Services, or SAS, is the office at Yale responsible for facilitating individual accommodations, ranging from dietary to housing and academic accommodations. For academic accommodations, depending on a student’s needs, students with SAS accommodations may be able to receive note takers, extended time or breaks during exams, as well as special accommodations for laboratory courses, among others. 

SAS accommodations can be obtained with or without a formal diagnosis, and SAS helps determine which accommodations are appropriate based on initial conversations. 

During her gap year, Baker first saw a nurse practitioner at Cornell Scott-Hill Health Center and received a referral to Yale New Haven Neurology and Cardiology, but she established care at Yale Health once returning from her gap year. The notes given by her primary care physician at Yale Health, Baker said, were essential to receiving accommodations. 

While Baker was able to get SAS accommodations without a formal diagnosis by providing a list of symptoms from her doctors, the only way she thought these accommodations could have been better was if she had applied sooner. 

However, students noted discrepancies among how different professors handle SAS accommodations. 

Parrish receives SAS accommodations that give him extra time on exams and allow him to use a glucose-tracking device during exams, he emphasized that the whim of individual professors creates discrepancies in how accommodations are handled. 

“Just because you have accommodations in place doesn’t mean that they’re always respected,” Parrish said. “There are oftentimes a lot of hoops that we have to jump through.”

These hoops, Parrish explained, include having to go to exams at separate locations or times, as well as having to set up special meetings to get lecture recordings. Parrish described this process of continually asking for help from often-unaccommodating professors as incredibly draining, and he said professors frequently do the bare minimum. 

In one class, Parrish was told that students with SAS accommodations for extra time had to show up one hour early for weekly quizzes. Once, Parrish emailed his professor letting them know he could not make it in time, but the request for an alternative time slot was rejected.

[photo headline=”” description=”” caption=”Arden Parrish, who has Type 1 diabetes, was frustrated with his experiences seeking specialized care at Yale Health and receiving accommodations for classes.” credit=”Tim Tai, Photo Editor” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/upclose_sc_TimTai_PhotographyEditor_17-scaled.jpg” ALIGN=”full”]

Corson also expressed frustration with a variability amongst professors as to who will be understanding about absences or provide lecture recordings, especially for those without formal accommodations. 

Denner, on the other hand, said she finds SAS accommodations to be “less relevant” for her condition, as chronic pain impacts day-to-day operations, not just during exams. What she hopes to see, Denner said, is a more lenient culture for those with chronic illnesses, while not sacrificing academic rigor or fairness. 

As someone without SAS accommodations, Corson said she wishes that professors could operate in a more standardized way that would alleviate stress and allow her to communicate with professors without disclosing medical information. 

More specifically, Corson said she often has to miss class for doctor’s appointments in Boston, but must continuously communicate this with professors, as there is no standardized policy or mechanism for reporting excused absences other than communicating with professors directly. Dean of Yale College Pericles Lewis confirmed that no such standardized policy exists, as Dean’s Extensions do not apply to excused absences. 

Jordan Colbert, associate director of SAS, wrote to the News that the problem of faculty not being receptive to accommodations is a “rare issue” that is handled by SAS meeting with the student and professor to understand the concerns and collaborate to figure out how to implement their accommodations. Colbert added that SAS also works with the Poorvu Center of Teaching and Learning to proactively support an understanding of disability resources to help professors make their classroom more accessible. 

Yet, O’Rourke, who also serves as a senior lecturer in the English department, emphasized the need for Yale to educate its professors and administrators in order to foster a more understanding environment. 

“Students will need accommodations — not may need them, but will need them — and that’s not a reflection of a student’s work or mind,” O’Rourke said.

“The busy olympics”: The influence of Yale’s productivity culture on accessibility 

In addition to the difficulty of finding care, students with chronic illnesses also described a high-achieving academic culture in which sacrificing your physical and mental needs over your school work is typical. 

“It is Yale, and you have to be on your game 100 percent of the time here,” Parrish told the News. “You have to be focused on whatever it is you’re doing, especially for me as a double major and pre-med. I don’t have time to be giving anything less than my full efforts, and it’s expected here. The baseline is 100 percent.” 

This baseline of 100 percent, for Parrish, is difficult with Type 1 diabetes because his attention is always pulled towards how monitoring he is feeling, taking his insulin doses or worrying about adjusting his pump or glucose monitor — small factors that contribute to feeling isolated in this culture of productivity. 

Similarly, Corson described the academic culture at Yale as one in which students define themselves by their “intense productivity.” 

“That at its core is very problematic and harmful to a lot of folks, especially for people with disabilities,” Corson told the News. 

Garzon echoed the sense that these pressures can be harmful, describing Yale’s culture as the “busy olympics.” She said her pain, which can often arise in high stress situations, makes daily life hard not only physically, but also emotionally. 

“It makes me sad — why can’t I just be out here doing whatever I have to do and not just sitting at home in pain?” Garzon said. 

O’Rourke also said the culture at Yale — and in higher education broadly — needs to become more accessible for those with chronic illnesses. As a society, O’Rourke said we must shift away from unrealistically expecting people to consistently perform at this baseline of 100 percent. 

“We have seen the toll this is taking on our bodies, we have seen the toll this has taken on our climate, it is just an unrealistic model,” O’Rourke said. “It is unsustainable. We need to understand that excellence does not correlate with constant, top-tier performance.”

Corson, on the other hand, spoke to how the culture can be shifted at Yale specifically through a top-down administrative approach that reshapes the narrative of what Yale stands for. 

This “piece-by-piece” process, Corson described, starts by implementing policies that increase accessibility for students. 

“Why I think it is so challenging is because Yale is 300 years old, and how can you reform such a massive institutional legacy that has been set up to define students by productivity while at the same time protecting and managing student health?” Corson said. 

Colbert wrote that the academic culture can have both positive and negative impacts. 

While the drive to appear academically perfect often discourages students from seeking accommodations, Colbert wrote that realizing that peers may be finishing assignments more quickly or absent less frequently may help a student to recognize their own need for accommodations. 

Lewis told the News that students have a tendency to pile too many things on in the midst of academics, extracurricular life and social life. He said he aims to advise students to consistently check in with themselves and always ask for academic support when needed. 

“We try to be appropriately accommodating to people with any kind of illness or family situation, but at the same time, you want to have deadlines and clear deadlines, because, in terms of management of your health and well being, having clarity is sometimes as important as having flexibility,” Lewis said.

While Colbert acknowledged that the pressure to do the most may cause students to push through disability-related barriers, he said that the Yale population has become much more receptive to concepts of accessibility and equality in recent years, citing the growth of affinity groups and accessibility-focused events. 

“Stigma still exists, but from what we see, students are more engaged in advocacy and awareness than

in previous years,” Colbert wrote. “That helps to minimize the academic and social impacts on the decision to seek accommodations.”

Finding community 

When Bender came to Yale in 2015, there was little structure or support for students with disabilities. However, Bender met someone who also had ulcerative colitis, with whom she later became pen pals. Later, Bender, along with Benjamin Nadolsky ’18 and Matthew Smith ’18, founded DEFY. 

“DEFY came from a desire to have a social and advocacy space for students with disabilities and the idea of disability as a culture and an identity,” Bender said. 

Bender said she views the founding of DEFY as a matter of inevitability as the wider culture at Yale had already begun to shift towards being more cognisant of those with disabilities. 

Since the founding of DEFY, both Bender and Lara Midkiff noted the increasingly supportive climate on campus. For example, the number of staff at SAS has increased, and DEFY and SAS have instituted their own peer mentor programs.

[photo headline=”” description=”” caption=”Rose Bender, left, and Benjamin Nadolsky co-founded DEFY in 2016 to help advocate for Yale students with disabilities.” credit=”Courtesy of Rose Bender” src=”https://features.yaledailynews.com/wp-content/uploads/2023/04/upclose_sc_CourtesyOfRoseBender_02-A-scaled.jpg” ALIGN=”right”]

These communities help provide connection and visibility to counteract the experience of chronic illness which Parrish said was often isolating. 

“Watching the people around me pursuing their passions with the same energy that I want to and feeling at times like I’m the only one who’s being held back by this sort of invisible barrier,” Parrish said. 

Parrish, who serves as a peer liaison for SAS, described dinners with the other peer liaisons where they would eat together and share stories about frustrations with professors.

At the medical school, Bender founded a local chapter of the national organization Medical Students with Disabilities and Chronic Illnesses this past fall, which the anonymous medical student said has helped provide support. 

Before joining the group, the student looked for support by reaching out to SAS and asking if she could talk to anyone who had similar experiences, but was told SAS could not disclose student names due to privacy reasons. 

However, the student said the group has been helpful, bringing in perspectives from different class years and disabilities, which has helped alleviate the isolation of being shut off from support. 

“While I understand that, it can be isolating to just be shut off from any kind of support, which is why we started our Students with Disabilities group to have that kind of knowledge sharing and support group around us,” the student said. 

DEFY was founded in 2016. 

Correction 4/21: A previous version of this article misattributed a statement from Steere to Karen Peart.