Accepting Help and Accommodations for a Hidden Disability
I struggled during my time at sixth form with narcolepsy. However, I managed to get the grades I needed to go to university and complete my bachelor's degree in psychology. When I went to university, I had not long received my official diagnosis.
At school, I had accommodation of rest breaks in place for my final set of exams. At university, this continued. In the United Kingdom, the government offers funding for extra support and accommodations for disabled students. But I didn't apply for this. Why?
Barriers to accommodations
Research suggests that the most significant barriers for students with a disability are often related to identity. In a 2010 study, students reported a desire for self-sufficiency and not wanting their disability to infiltrate their identity as college students. Further research also suggests that students want to prove that they can do college without accommodations.1,2
This research reflects how I felt. I started my degree and was determined to prove that I could do it by myself without any help. At this point, I hadn't entirely accepted my diagnosis and the consequences of this. Therefore, I held the view that taking and seeking help was a sign of giving in.
Accommodations and assistance were not things I had needed before in school. I felt that having these would depreciate my ability. I also did not want help from the disability office because I didn't have a disability in my eyes.
My desire for self-sufficiency helped no one
I pushed through my degree and graduated with a 2:1 in BSc Psychology. To the outside, it seemed like I was able to cope. The reality is that it was a massive struggle. Throughout my degree, I was missing large chunks of lectures because I could not stay awake. It took me so much longer to read the required texts, research topics, and write essays. Revising for exams was extremely difficult as a result of the sleepiness and my memory issues.
I had to work so much harder than I ever had before and realistically harder than my friends. I had to attempt tasks twice, three times. No matter how much I needed to get work done, at certain times, I was unable to because of my sleepiness.
Research suggests that many students believe that accommodations are unfair to other students.2 This was another one of my struggles. I gave in to the stigma of narcolepsy. I eliminated all of the ways that narcolepsy impacts someone. The reality is that it was unfair to me. I was working so much harder to complete the same task as other people.
The need for self-advocacy
Research suggests that to make use of accommodations and be successful in education, students with a disability need to demonstrate strong self-advocacy skills, a willingness to disclose their disability, and a positive "can-do" attitude.3
Having a hidden disability makes the need for self-advocacy even greater because, without it, we may get dismissed or left to deal with it alone. Developing strong self-advocacy skills and a willingness to disclose my disability took a long time and a lot of work for me.
Going back to university
Luckily, I am now in a position where I can advocate for myself and ask for accommodations. I am going back to university this month to complete a master's. This time I applied and have been granted disabled students allowance.
I have equipment and software that will help me in ways that I didn't even know were possible. Hopefully, this will make things much less of a battle and give me the opportunity to perform to the ability I know I can.
A level playing field
This is a note to people who struggle to accept help and accommodations. Whether in an educational setting, the workplace, or at home, we are every bit deserving of assistance and help.
Remember, we have to work so much harder to complete tasks that others complete with no problems. It is NOT giving in to narcolepsy. Nor is it giving you an upper hand. In fact, it is allowing you to be on a level playing field with others.
At what age were you diagnosed with narcolepsy?