8 Essentials for University Success with a Disability: How to Build a Bulletproof Support System

I have a disability.

I never thought those four words would describe me, especially at twenty-three, but in my first few days as a graduate student, they’ve become a heavy truth I have no choice but to accept—and at the same time, they’ve turned into a statement of empowerment.

There’s no way to pretend I can do everything you’d expect someone my age to do, when climbing a few flights of stairs put me in bed for all of last weekend—and forty pages of reading brought on a panic attack because my reading comprehension is so abysmal.

I have a disability…

Was it a mistake to attempt grad school?  What if university simply isn’t meant for “people like me”?  Maybe I should have instead found a flexible job that’s better suited for my disabilities and chronic illness.

But there’s a reason I got into this program—and a reason my mentors believed I could finish it:

I am more than my impairments.

Despite what society, and even I myself at times, might think, having a disability and a chronic illness doesn’t mean I can’t succeed—it just means I might need to do things in a different way, or with some extra help.

I believe that everyone, even those in perfect health, could use a solid support system when making a major life transition like going to grad school or college.  But as a person with a chronic illness that qualifies as a disability, there are seven key supports that I’m using to conquer university…

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1) Accommodations from Student Disability Services

The first step I took was to meet with Student Disability Services to discuss what accommodations I require to succeed.  (You’ll first need to get a doctor or psychologist to write a letter to document your condition and make recommendations.)

After reviewing the letter from my doctor and talking it over with me, the disability services coordinator and I decided that I will:

  • Have twice the usual amount of time to complete timed assignments and tests
  • Take tests in a separate room (they have a proctored testing center for this purpose)
  • No grade penalties for absences related to flare-ups
  • Extensions on assignment deadlines if I have a flare-up
  • Permission to type all assignments and written questions on exams
  • Permission to record lectures
  • Someone to read aloud test questions
  • Someone to read any assigned readings to me

It was overwhelming to see such a long list on my accommodation forms, but I left the office feeling like I had the tools I needed to be successful.  And it’s great knowing I have someone in my corner to vouch for my needs if I run into any issues.

 

2) Professors

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Outside of my blog, I don’t like to bring up my illness, so it’s been hard having to tell my advisor and other professors about it.  I decided to do so because I know there will be days when I’m too sick to come to class, and they need to know why so that my grades don’t suffer.

In my experience, when I’ve opened up a little bit both now and in college, the vast majority of the time, professors have been nothing but supportive and willing to do what they can to help me succeed.  But it’s hard for them to help you if they don’t know you need it.

Another important thing to remember about professors is that you can, and absolutely should, go see them during office hours if you have any trouble with an assignment.

That’s the reason I got straight-A’s in my final semester, despite a disastrous PANS relapse—I took every assignment that I struggled with to my professors during office hours and asked if I was on the right track.  And since I’d told them what was happening to my brain, they were better able to assist me and explain concepts in ways I could understand.

 

3) Friends

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In college, no one knew I was sick except for a handful of close friends: my roommate and a couple of people from a prayer group.  I hid it like it was some dirty secret, because I didn’t want anyone to think I was a freak.  (I often felt like one, because it’s harder to separate yourself from your illness when it’s your mind and brain that are affected by it.)

As a result, I spent many lonely, dark nights in flares feeling like no one was there for me—but it was partially because I didn’t let anyone be there for me.

This time, I’m thinking of doing the experiment of being a little more open about my condition.  I’m not going to tell everyone I meet that I have these issues of course, but I’m also not going to try so hard to cover them up.  And if someone doesn’t want to be my friend because of them, then they’re a jerk, and I don’t need them in my life anyway.

I hope that by making my needs more known, I will have better relationships with people.  For example, if I briefly explain I have a condition that prevents me from staying out late or doing any strenuous activity, then people won’t just think I’m blowing them off if I keep rejecting their invitations to events I can’t participate in.

 

4)  Family

If you have a close relationship with your family, don’t feel like you need to “be more independent” and drift away when you go to university.  So many people don’t have a nice family, and if you’re fortunate enough to be on good terms with yours, then treasure that and lean on them when times get tough—and call once in a while!

I text my family every day and try to do a video call at least once a week.  If you think you don’t have time, then you can eat dinner together virtually.  Or, if you’re like me, you can talk while you’re filling your pill case for the week—a task that can easily take me over an hour.

It helps to have some family members (or even just old friends from home) to talk to who know you well and can help advise you on the new challenges that university will bring.

 

5)  Residence Life and RA’s

My neurologist told me that people with my condition generally shouldn’t share living space with others in a dorm setting because of the increased risk of infection.  If I had a roommate who got sick, just being near them would cause a symptom flare. On these grounds, I was able to get a medical exemption to live in a dorm room with a private bedroom and bathroom.

Many universities have single rooms for people with certain medical or psychiatric issues.  Talk to Residence Life or Disability Services about it.

As for your RA, it’s their job to look after their residents, so if you need something, don’t be afraid to ask them.  Also, it’s a good idea to tell them a little bit about your condition so they know how they can help.

Another consideration is that I’m asking my RA to tell me in advance when the fire drills will happen so that I don’t have to climb down so many flights of stairs since elevators turn off in a drill or real fire.

This is important for any of you with fatigue or mobility issues.  Though in my case I could physically descend all the stairs, the exertion would likely cause a Lyme flare that would make me quite sick, so it’s best if I can avoid it unless there’s an actual emergency.

 

6) Therapist

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Adjusting to a totally new life in a new city is stressful, and such life changes could aggravate any existing mental health conditions—especially when you also have the stress of a chronic illness to cope with.

I’m being proactive by finding a therapist to keep an eye on me every week or two so that I’ll already have help in place if I start to unravel—and hopefully to prevent me from unraveling too far in the first place.  I may not need to see her every week, but it’s good to know that I have someone I can come to if I need that.

Most universities have a counseling center on campus, but a lot of them place limits on how many times per year you can use it.  You can still go to them and ask to be referred to someone off campus, like I did.

 

7)  Doctors

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It can be tricky to find new doctors when you have a chronic condition, especially if it’s rare or controversial like mine are.  Nevertheless, it’s a good idea to at least find a General Practitioner who can do a physical exam or prescribe antibiotics if you get an infection.  And they may be able to refer you to a specialist who knows about your condition.

Most insurance companies have a doctor lookup tool online where you can search for in-network providers near you. Then you can call multiple practices and ask if the doctor is a good fit for someone with a rare disease.  If you try out a doctor at an intake appointment and they’re not respectful, you can always move onto someone else.

However, even though I’m moving to another state, I’m keeping the same long-distance neurologist and hometown psychiatrist because they’re both PANS specialists.  Doctors who have this level of experience treating PANS are hard to come by, and these two know me so well at this point.  I’d rather not start over.

Keep in mind that telemedicine is perfectly legal in many states now, especially if you originally saw the doctor in the state where they’re licensed.  Check local laws.

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Lastly, don’t be afraid to admit you need help.

Telling all those new people about my condition hasn’t always been easy, but in the end, it’s worth it to know that I’m going to have the support I need while my brain and body continue to heal.

I still hope that most of my challenges will go away if I can fully recover from Lyme and PANS—indeed, I’m vastly improved from a year ago.  But no matter what, I’m coming to accept that right now, yes…

I have a disability. 

And I’m not going to be ashamed of it.  I won’t feel bad about asking for what I need at university.  I believe that education is for everyone—abled or disabled, healthy or ill—and I’m determined to make the most of this opportunity that I’ve been given.  And I hope these tips will help you do the same.


P.S. If you enjoyed this post, I’m working on a book on doing college with chronic illness.  Expected release date is 2020.  Read more here.

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These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine

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In 2012, when I developed an extreme case of Obsessive-Compulsive Disorder overnight, all I wanted was to get better—not to spend the next six years fighting to get treatment for a “controversial” disease.  However, when conventional therapies failed, and I rapidly declined after Strep and mono two years later, only steroids were able to help my severe psychiatric symptoms.  It was then that I realized the truth wasn’t always easy to accept: Continue reading “These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine”

10 Ways to Feel Less Hopeless When Chronically Ill

“I just can’t keep going.”

“I feel completely hopeless.” 

“How can anyone live like this?”

These messages come to my inbox nearly every week from kids and teenagers who think PANS or Lyme is the end of the life they once loved; from adults who’ve been fighting for years, unsure how much longer they can go through the cycle of relapse, treatment, and recovery; and even from parents who are tired of being too strong for too long.

Continue reading “10 Ways to Feel Less Hopeless When Chronically Ill”

Is There Hope in the Unknown of Chronic Illness?

Three months ago, as I drove away victoriously from the IV infusion center for the ninth, and final, time that semester, I almost dared hope I’d left behind the last three years of treatments and relapses… Almost.

It was the end of my college career, and I’d just spent its entirety fighting Lyme disease and an autoimmune condition that doctors still aren’t sure how to treat—or what the long-term prognosis is. I’d not only juggled exams and papers and weird living arrangements for four and-a-half years, but I’d been battling through countless procedures and medications and appointments—always in the naive hope that my illness would soon be over. Continue reading “Is There Hope in the Unknown of Chronic Illness?”

Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS

This week, I made the mistake of reading the PANDAS Wikipedia page, and now I’m boiling over:

“Treatment for children suspected of PANDAS is generally the same as standard treatments for [Tourette Syndrome] and OCD. These include therapy and medications…”
Continue reading “Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS”

Do These 7 Symptoms Make College Impossible?

They say that “school refusal,” or a deterioration in school performance, is a hallmark symptom of PANS/PANDAS.

Continue reading “Do These 7 Symptoms Make College Impossible?”

It Isn’t You: Defying the Shame of My Chronic Illness

Since the first day I became ill, shame was a mainstay in my life with PANS… Shame about irrational fears that no one understood. Shame that I felt no control over my mind or body. Shame that I couldn’t do what I once could. Shame that I lashed out at my parents and said things I never wanted. Shame that I was spending more time with doctors than friends. Shame that I’d become a different person that I hated.

Continue reading “It Isn’t You: Defying the Shame of My Chronic Illness”

How I Keep Up with College Fighting PANS & Lyme

In the past three years of running this blog, one of the most common questions I get asked is, How have you been able to do college when you’ve been so sick?

Truth be told, when I look back at the last four years, I’m surprised by it, too.  And not only have I made it through eight semesters, but I’ve made good grades.  This sounds like an impossible feat for someone fighting an illness that causes severe mental disorder and sometimes severely incapacitates my cognition, but over the next two posts, I’m going to show you how I did it. 

These posts might be longer than usual, so I hope you’ll stick around!  This week, I’m going to answer one part of the question…

Continue reading “How I Keep Up with College Fighting PANS & Lyme”