Last August when I entered my genetic counseling program at Mount Sinai, I worried about how the workload and clinical rotations would affect my body. Would my accommodations be honored, and would the program staff understand the implications of a chronic illness like mine? I have hypermobile Ehlers Danlos syndrome (hEDS) which affects my joints and autonomic nervous system. As a result, school and work pose unique challenges.
Now, a full year into the program, I can say with confidence that my disability has been respected and I’ve taken many bold actions to make sure of it. It is game-changing to consider my accommodations as non-negotiable. I don’t ask if I can have the accommodation I’m granted; I convey the accommodation I need and ask how we can make it work. For example:
- For clinical appointments where multiple medical professionals are in the room, I wheel in a specific rolling chair I found in that office to ensure I have somewhere to sit since persistent standing is difficult. Unfortunately, the rolling chair which perfectly serves my need, also happens to be annoyingly loud when rolled. Sure, I’d prefer a quiet chair and to not be slightly disruptive when appointments commence, but I push myself to be bold and accept that my need to sit is much more important than the minor annoyance of a noisy chair.
- I communicate to my supervisors when I am in a flare and the workload is temporarily too much. I’d be lying if I said I don’t feel bad for doing this, but everyone has been very understanding.
- I occasionally miss class and rotations for doctor appointments, and I let my teachers know as far in advance as possible.
- I use a rolling-backpack and couldn’t care less! I’d love to see the shock of my 8th-grade self-watching me strut around Mount Sinai without any of my previous embarrassment.
Most of my classes are recorded, and the medical school classes that spanned the whole first semester were live-streamed and could be watched at home.
My friends in the program are beyond accommodating and caring! They offer to hold heavy things for me or carry my bag up flights of stairs. They offer me the comfy chair or ask if I need a pillow behind my back. Being surrounded by future genetic counselors has its perks when you have a genetic disorder.
However, the hardest part is that while my disability resulting from hEDS can and has been surprisingly well-accommodated, the chronic illness parts can only be accommodated to a certain extent. I’ll be running on 60% when my classmates are more likely to wake up at a 90%. My fatigue, pain, and dizziness will often be present when I’m in school, studying, or working with a patient, and all I can expect from others is understanding and kindness.
I also recognize how much my chronic illness has truly helped me in my first year of school. I began rotations with over ten years of patient experience, and this translated to an easy transition into the clinical space. For example, I have a good understanding of what great versus mediocre medical care looks like, and I use this as encouragement to go the extra mile to help my patients, even if I’m tired and wanting to go home. I have a great understanding of medical terms, conditions, and lab tests. I am familiar with the flow of hospitals and doctor’s offices. All this has allowed me to study less and fly through clinical rotations with a lot of confidence.
I’m eager, excited, and thrilled as I enter my second year at Mount Sinai.