Written by Emerson Wheeler ’22, co-founder, Alliance of Disabilities and Chronic Illnesses in Medicine (ADACIM)
I’m embarrassed to be sick.
I’m not supposed to be.
As a future physician, I’m supposed to be a monolith without flaws, without a need for sleep or food. I’m supposed to have an inexhaustible capacity to help others.
While most people know this is an unrealistic ideal, it doesn’t stop them from harboring these ingrained subconscious expectations and it doesn’t stop us, as future medical providers, from feeling pressured by it and self-conscious about falling short.
Society often views chronic illness as personal failure. So, when I find myself limited by my illness, I can’t help but ask myself Why can’t you work harder? Why can’t you do what everyone else can? Why did you let this happen?
We try to avoid thinking about just how vulnerable we are to sickness. As medical professionals, we excuse ourselves from the possibility of becoming ill, as though we can choose to opt out of this inescapable fact of life. Incurable suffering makes us uncomfortable because our job is to heal, to fix, to remove pain. When faced with symptoms we can’t fix, both in ourselves and our patients, common reactions are impatience, disappointment, and disbelief. To avoid the discomfort and potential shame of being unable to heal a chronic illness, we often unintentionally and subconsciously place the burden on the ill individual, be that ourselves or a chronically ill patient.
I didn’t realize how strongly this way of thinking was ingrained in my mind until I became ill myself and was forced to confront my resulting shame head-on.
Training to be a medical provider while disabled by chronic illness has allowed me to acknowledge the fallibility of all bodies. It’s also made me realize the need for continued advocacy within medical education and health care systems in order to educate medical educators and future physicians to understand the experience of those like myself who are both medical students and patients.
My hope is to share the lessons I’ve learned with medical students like myself and those who educate us so that we can receive the best education possible and, in turn, become advocates, allies, and ulti-mately, better healthcare providers for our future disabled and chronically ill patients.
I. Expect Assumptions
The U.S. medical system is designed to streamline service to provide the best care possible by breaking down patient attributes and behaviors into simple labels for further diagnosis and treatment. Each label stands as shorthand for risk factors, likely behaviors and, unfortunately, associated assumptions.
The label “medical student” carries its own assumptions: white, relatively wealthy, male, heterosexual, cisgender, not overweight, neurotypical, able-bodied. Each contradiction to these assumptions carries a weight that the student then carries through their training. Further, to be deemed “professional” in medicine you must exist as though the labels of the assumed medical student are your own. Each devia-tion from this norm signifies abnormality, pathology, or unprofessionalism.
II. Advocate for Yourself
Being a patient is a full-time job.
Being a medical student is also a full-time job.
This year, in addition to the experience of merely existing as a queer medical student in 2020, I have also established and maintained communication with six different specialists about my own medical care. I’ve been scheduling appointments for MRIs and ultrasounds without knowing what my schedule will look like two months from now, because I will be in an entirely different clinical rotation. I’ve had to travel out of state, during a pandemic, to see a specialist who knows enough about my condition to help me learn to live with it. I’ve stepped out of a meeting to take a call, been diagnosed, said ok thank you, and then returned to calling consults and writing notes for residents to sign. I’ve had to learn what accommodations I need, how to ask for them, and how not to internalize shame and stigma surrounding my own illness and that of others.
To exist as chronically ill or disabled is to constantly advocate for your own care.
The medical community is quick to dismiss chronic pain in accordance with their assumptions about the people who experience it and the way that it should present. Therefore, the disabled individual must always be prepared to prove their experience.
Additionally, you must be aware of your own limits and how they affect your capacity to care for your-self and perform as a medical student. If I attempted to make it through the day without accommodations, or even without proper rest, my performance would suffer. I would be too exhausted to complete basic care tasks at home, and my ability to serve my patients would be hindered. This awareness of self and desire to work with my needs rather than against them allows me to reframe what being a medical student looks like in a way that neither hinders my health nor my ability to be a medical professional.
III. Communicate Needs Early and Often
Set expectations early and continue communicating as your health-related needs change — because they will change. Disability is incredibly dynamic and unpredictable.
Preceptors may overlook required accommodations or see accommodations as a mark against performance.
During clinical rotations, I received glowing praise for my overall performance and bedside manner but was also aware that there were those who faulted my performance based specifically on the accommodations I received.
Being allowed and able to articulate my needs helped me perform at my best.
IV. Use Your Experience to Become the Doctor You Wish You Had
When I waited months to see a specialist, brought detailed notes, demonstrated evidence of my suspected condition, and was spoken over and bluntly dismissed, I remembered.
When I overheard snide assumptions about a patient with the same disorder I have, I remembered.
When I received comprehensive patient-centered care, was listened to, and was involved in the planning for specialist meetings and developing pain-management strategies, I remembered.
When I become a doctor, I will carry these experiences with me. I will remember how they made me feel and allow them to guide the way I interact with patients.
Understanding the process a patient goes through is crucial to becoming a good physician—it allows for a check on our own assumptions about labels, our dismissal of what we can’t directly see, , and our detachment from the concept of illness.
I will be a fantastic doctor because of my experiences, not in spite of them.
I will tell my patients “I understand,” because I do.
Wheeler writes from personal experience as a medical student with chronic illness. Wheeler recently co-founded the Alliance of Disabilities and Chronic Illnesses in Medicine (ADCIM) with Florida State University College of Medicine Abigail Schirmer. Why did Wheeler and Schirmer found ADCIM? They write, “After answering an anonymous call of alliance for chronic illnesses on Twitter, Abigail connected with Emerson and the primary idea for a national organization to support medical disabled students with and students with chronic illnesses was formed. The rest is history.”
Learn more about their advocacy work at https://www.adacim.org/
For more information about ongoing support and advocacy work being done in medical education https://medicine.umich.edu/dept/family-medicine/lisa-m-meeks-phd-ma. Dr. Lisa Meeks is the co-founder and past president of the Coalition for Disability Access in Health Science and Medical Educaiton and has consulted for the UVM Larner College of Medicine.