A person holding a megaphone with a speech bubble coming out of it with a bus, clock, and eye mask

Asking for Help & Applying for Disability

I’m not very good at asking for helping when I’m sick.

Why is it so hard to ask for help?

It’s ironic because I’m always seeking ways to help others and not afraid to ask for help when it comes to academic struggles. But when it comes to sickle cell, I hesitate to ask for help. I guess I worry I’ll find myself in a situation where I have to explain my disease to someone or defend the reasons why I need help, which can be frustrating and exhausting at times. Yet, I love educating others about sickle cell when it’s not related to me needing help. I have to work on that.

Identifying as disabled

I remember the first time I started identifying as disabled, even if just transiently. Growing up I never saw or thought of myself as having a disability. Maybe it’s because society focuses so much on visible disability and sickle cell pain is often invisible. But sometimes the pain is so much I can’t move, there have been times I couldn’t walk or do anything but lay there. So, in college when I learned of different types of disabilities and how people can define that label for themselves, it felt fitting.

Applying for disability

That was the first time I filed for disability. I remember living on the far side of campus in the student-style apartments and having to walk to the bus stop in the cold. Some days the walk was brutal, and I felt it affecting my health but didn’t know what to do.

I met with the disability services at my school, they had a person dedicated to people with chronic – even if invisible – disabilities. We talked about different options for me, like a bus that could pick me up from my apartment and special library access. It was kind of a process to get the accommodations set up so by the time they were available to me, I didn’t need it anymore. The library access was nice though.

Applying accommodations to medical school

Fast forward to medical school. Every year there’s an option to apply for extra accommodations through accessibility services. I chose not to apply as I didn’t feel it made much of a difference in college. Also, COVID meant staying home for half of my medical school experience, so I was mainly learning from home.

But third-year has proven to be a different beast. Back in person, still studying, and basically on my feet 8-12 hours a day or more some days. It has been more physically demanding than I expected, and I’ve felt it affecting my health. So, I decided to apply for services.

Again it’s proving to be quite the process. Basically, I have to describe the nature of my disease, how it affects school, and what reasonable things would help me. It’s a lot but I’m hoping maybe it’ll make it easier for someone else with sickle cell to get these services in the future. I’m hopeful I’ll get some extra accommodations when I need them.

My ask: Time

The things I find helpful is pretty different than what I’m guessing other people with disabilities may need. To put it simply, I need more time. Time to recover when I’m sick, time to rest so I don’t get sick, time to take the elevator if I don’t feel well enough to take the stairs, or time to simply sit instead of stand.

I hope these accommodations will come in time.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Sickle-Cell.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.