Even with those diagnoses, I never got extra help. My parents and I tried to get help, but I never got it. The schools always told me that my diagnoses weren’t strong enough.
Making the decision to go back to school
Since I was finally diagnosed with narcolepsy at the age of 22, I was out of school and even done with college. I always told myself that I would never go back to school because it was so tough.
2 years after my diagnosis, I have my symptoms pretty well-controlled, and I have decided I want to go back to school.
Making an accommodations request
I just started classes this week, actually. I knew I would need strong accommodations in order to be successful in my classes, so I made sure to be ahead of things. Thankfully I have a great support system and they helped me tremendously.
Here is a list of the steps I took to get the accommodations I thought would be helpful for me.
Step 1: Writing a rough draft letter for my doctor
For me, I needed a doctor’s note to help explain my diagnosis and what accommodations would help me succeed in school. I wrote up a list of things that would help me and why. Some of the things I put on the list were extra time on tests, a test reader, my own space during tests, ebooks for my textbooks, and more.
I also included a paragraph that I wanted my doctor to add to the list of accommodations in the letter. The paragraph stated that I was diagnosed with narcolepsy in May 2019 and it explains narcolepsy and the symptoms I experience.
Step 2: Contact the accommodations center
At the college I am attending, we have to request an appointment with someone at the accommodation center to get things started. When you set up an appointment, you have to put in information about your disability and what accommodations you want.
So I did that, and I then had to schedule a time that works for me to set up a Zoom meeting. Since I was so ahead of things, I scheduled something for just a few days later. I had the meeting, and it went really well. Having the rough draft letter I sent to my doctor was really helpful because I had the accommodations I was asking for on paper, so I didn’t have to remember them.
Step 3: Patiently waiting for approval
I had to wait for my doctor to fax an official letter to my school and get a copy of my accommodations letter from her. After my school got the letter, I got an email from the accommodations person I work with saying she received the letter and that she would be in touch within a week or 2.
It was probably 2 weeks later, and she sent me an email saying I got every single accommodation that I asked for. This was very comforting because I knew I needed most, if not all, of the accommodations if I wanted to be successful. I then had to wait to receive the official letter from the accommodations center.
Step 4: Talking to each of my instructors
As time got closer to me starting classes, my accommodations center person told me it would be a good idea to email each instructor to tell them a little more about my narcolepsy if I felt comfortable doing so, which I was completely comfortable doing.
I emailed each instructor and told them a little about narcolepsy and what I experience day-to-day. Most really appreciated me doing this because they have a better understanding of me. I know at most schools that you don’t have to disclose your disability unless you choose to, but I feel that telling my instructors a little about my narcolepsy only helps them understand why I am the way I am and why I need the accommodations I asked for.
Every journey looks different
These are just some brief steps that I took to get the accommodations I needed. Everyone is different, and every school is different, so my journey of getting accommodations may look different than others.
Have you had a hard time getting accommodations before or after your diagnosis? What are some accommodations you would ask for?
What is the hardest part of coping with narcolepsy?