Patient Story

Danielle Purtell is a medical student at Tulane University School of Medicine who has survived medical school with Ehlers-Danlos Syndrome. She will graduate in 2022 and is excited to complete a Family Medicine residency. As someone with chronic illness and invisible disability, Danielle knows firsthand the importance of a strong and compassionate primary care doctor, and is honored by the opportunity to become one. She holds student leadership positions with the Louisiana Academy of Family Physicians and in many Tulane courses and organizations.

 Danielle will be representing Louisiana this summer at Miss North America and National Elite Miss. Her platform, “Not Invisible,” educates on, advocates for, and empowers those with invisible illness and disability. She will teach you how to survive medical school with Ehlers-Danlos Syndrome.

While I’ve lived with Ehlers-Danlos Syndrome my whole life, I wasn’t diagnosed until my second year of medical school. By then, Ehlers-Danlos Syndrome  and its co-morbidities (for me, Daily Migraine and POTS) were so severe that I was functionally bed-bound, failing classes, considering withdrawing from school and giving up on my dream of being a doctor.

After a few months of intense treatment and building my team of doctors during a health leave, I was able to return to medical school. By then, I knew that I needed accommodations in order to thrive. When I reached out to the University’s accessibility office, I was met with confusion and shrugged shoulders. They had no idea how to help a medical student. The grueling physical and mental demands of medical education are so unique. EDS, POTS, and Daily Migraine in medical school were far beyond what they were equipped for. The office wanted to help, but needed me to write my own accommodations.

That was easier said than done. I had no idea where to start. How would I modify a system that expects students and trainees to have superhuman stamina? For example, a fundamental part of inpatient medicine is “rounding” on our patients. This means hours on our feet walking from room to room, standing at the door or bedside discussing the patient. Between my POTS and joint instability, I could hardly last 15 minutes without feeling sick, let alone the ten hour rounding marathons that happen on the wards. Then came the issue of fluorescent lights, poor ergonomics in workrooms, loud noises and strong scents, all of which exacerbate my Daily Migraine and Occipital and Trigeminal Neuralgia. How could I build my own accommodations in an education system built for able bodied and pain free individuals? How can I survive medical school with Ehlers-Danlos Syndrome.

It’s possible with a bit of creativity. Now that I’ve built my accommodations to suit my needs, and now that I have the honor of mentoring chronically ill and disabled medical students across the country, I’m able to share these pearls on how to set ourselves up for success:

What’s hard, and what hurts? Start there.

Asking an already overwhelmed and painful student to build their own accommodations can cause panic or distress. I tell my mentees to mentally walk through their day and identify what hurts, or what is difficult, or where they struggle and don’t feel the playing field is level. For example, I become pre-syncopal when I stand, and it makes it difficult for me to participate fully during rounds. How can I fix that? I knew I just needed to sit… so I started carrying a small foldable camping stool, and now I can sit down whenever I need. For my migraines, light from computers or fluorescent bulbs makes my Daily Migraine worse. My school now knows that I wear special glasses and take my tests in a dark room at home. If you don’t know where to start with accommodations, just reflect on what’s difficult and build from there.

A paper trail matters

Especially in a system that isn’t built for us, it’s essential to keep a paper trail to 1) ensure your school is on your side, or at least aware of your needs, and 2) to protect yourself should anybody give you a hard time. I encourage my mentees to start communications with the accessibility office as soon as possible, and to save correspondence with the office and their doctors. Also, if a mentee meets with someone in administration, I encourage them to get a meeting recap in writing via email, so that any spoken word can be part of their written records.

You are worthy and deserving

I always struggle with internalized ableism, as do many of my mentees. I sometimes think that “this is my fault, I’m just weak and lazy, I just need to try harder.” Please remember that you are worthy and deserving of assistance in order to achieve your goals. Needing to sit during rounds doesn’t make you weak. Taking a day off for your own doctors’ appointments doesn’t make you bad at your job. Now more than ever, it is important for those of us with invisible illness and disability to become visible. We are capable, strong, and contribute to a diverse and multidimensional team.

You will survive medical school with Ehlers-Danlos Syndrome.

• Stay hydrated with electrolyte drinks to help control dysautonomia.
• Wear stability or motion-controlled shoes to provide a stable base.
• Wear compression pants underneath work pants or dress to help control dysautonomia symptoms.
• Continue to find time for pilates-based exercises, even if it is for 5 minutes per day.
• Eat small snacks throughout the day.
• Meditate at least 5-10 minutes daily.