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College Life with a Chronic Condition

In my last post, I mentioned this article about DePaul University:

http://www.msnbc.msn.com/id/32863895/ns/health-health_care/t/school-gives-chronically-ill-students-chance/

and I talked briefly about the bare bones version offered at the University of North Texas. I had a comment that asked a very honest question:

If I answer “no” to all the questions on the disability accommodation form, then what is it that I and other students with chronic conditions need?

To people who are not sick with any sort of chronic condition (and, indeed, to many who are sick,) it’s easy to think people with invisible illnesses don’t need any help. Compared to someone in a wheelchair, or someone who’s blind or deaf, the people with invisible conditions seem very self-sufficient and capable of achieving a monumental task such as graduating college with no help. The great thing is we are. People with invisible illnesses usually don’t need help.

Usually.

Then there are those days. Those “bad days.” A day when crippling pain keeps you from being able to get out of bed (if you were lucky enough to be in bed when it hit). Those days when you have to take pain medicine, or a new kind or dosage of medicine, and you spend the day on the bathroom floor while your body adjusts. And I’m lucky that that’s as bad as it ever gets for me. I don’t have seizures. I don’t have a condition that causes me to loose consciousness. There are completely invisible illnesses that do much worse than just cause unexpected pain.

But then, what about treatment? Many invisible illnesses can be treated surgically. If it’s a day surgery, it’s easy enough to coordinate it so that it falls on a weekend or even summer or winter vacation. But what if it isn’t? As a college student, what do you say when your doctor says you need surgery? You’ve spent time and money on classes. Do you try to wait until the semester ends? Will you be able to pass classes if your condition worsens while you wait? Can you even afford to wait?

The big problem with invisible illness is that to the outside world, you’re fine. You might say you had to miss class because you were sick, but you don’t look sick. Teachers grudgingly accept a doctor’s note, but require you to turn in all assignments on time regardless. To quote the article, “Faced with the rigors of college, chronically ill students often end up having to take incompletes when they get sick, forfeit tuition and drop out. Others never even enroll.”

Of course, teachers have a reason to be suspicious of sudden illness with no perceivable symptoms. It doesn’t really matter what my doctor says if I just happened to get sick the week the essay was due. Many students abuse the words “I was sick.” It’s natural to reinterpret them to mean “I got drunk.” or “I am lazy.” Perhaps this is why many sick students don’t look for help. The article above perfectly captures this feeling that being sick is somehow taboo. “[students] felt judged ā€” by doctors, by teachers, by other parents and even members of their own family.” After all, seeing is believing. If I can’t see that you’re sick, how do I know you are?

This is my favorite quote from the article: “Many students say they’ve felt like they’ve had to educate their professors about chronic illnesses to get them to really understand what it’s like to have one ā€” how they often work frantically to get work done before the next round of symptoms hit; how those professors often only encounter them on their “good days,” and so have little idea how sick they really are.”

On student said “I was labeled as lazy – that I didn’t care. I didn’t know what was going on myself, and people were making fun of me on top of it.”

This is often what people are most surprised to hear, and what most people who have never experienced it tend not to believe. When I bring my illness up at UNT, I am made fun of. Teachers smirk. I try to tell them that another round of symptoms is coming up and I may miss class – they roll their eyes and tell me to try not to. Maybe my classmates get drunk and can’t come to class because they’re hung over, but not me. In fact, I think a lot of chronically ill people probably avoid alcohol just like I do – after all, I’m sick enough as it is.

The program at DePaul is a beautiful step forward, not just because of the flexibility, but because of the awareness it’s raised. “This initiative, says Lynn Royster, tells these students that the university believes that they are truly ill, that they are not making excuses. And one more thing: “We think you can succeed.” The program intervenes in the student’s academic career – weather your professor believes you or not, someone higher up is enforcing your right to be taken seriously.

This brings me to my problem with my own University. Here’s what I found on the front page of the UNT Office of Disability Accomodation’s website:

“You will learn to be the primary liaison to faculty and staff concerning your accommodation needs…Because eventually you will join the workforce and you’ll find that it is solely up to you to advocate for your accommodations.”

That’s great and all, and it is true, but it sort of sounds like it’s saying “You will learn to do the job we say we’re doing, because that’s life and you’re on your own.” It made me wonder, “Why does this office even exist, then?” I’ve been my own liaison for a while now, and professors do not care that I’m sick if they can’t see it. Doctor’s notes don’t change this. So I thought, “Well we have a whole office devoted to solving this problem, right?” When I went to them, I was pretty much told what I’ve always been told:

“But you don’t look sick.”

They can help me if I’m in a wheelchair. Or wear a hearing aid. Or travel with a helper dog. In other words – if I am visibly ill.

So what do we do? We don’t look sick. How do we get help? Or understanding? It’s true, I don’t need much. Most of the time, I’m always in class, I know the material, I get homework done on time… I’m your average student. But what happens on the bad day?

I’m starting small. I don’t want much. I don’t expect anyone to give me special treatment because I am ill. All I want is for my professors to believe me when I say I am sick. It’s truly awful, to be hurting and to know people are judging you wrongly. There’s nothing worse than being truly sick and knowing you’ll get in trouble for it. What we need is very simple, and can be achieved quickly and easily:

Awareness.

Remember, 1 in every 2 people are victims of invisible illness. There’s no reason for so many of us to struggle through college trying to act like we’re fine. There’s no reason to use your “sick voice” on the phone and say you have the flu when you’re actually legitimately ill. Being sick isn’t a taboo. I can’t help being sick and I’m really tired of pretending I’m not.

So what does UNT need? I know it’s a little unrealistic to envision all schools adapting a program like DePaul’s, but it is not far fetched at all to set in motion a movement for awareness. Teachers need to be educated about invisible illness. There should be no reason a student should fear being honest about their condition. Long term, I picture events, t-shirts, maybe even clubs or support groups. The sick half of any given student body should be allowed to be sick.

And wouldn’t it be beautiful if the well half would come together and say “I know you’re sick. But you can do it! We’re your friends and we believe in you!”

First step: this blog.

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About rachelmeeks

My name is Rachel Meeks. I have endometriosis, an incurable pain condition, IBS, a digestive illness, and PCOS, which causes irregular periods and infertility. After keeping my illnesses a secret, I started to get upset about how my fellow sick people were being mistreated because of ignorance. I knew that I'd need to stand up, make some noise, wear my heart on my sleeve, and admit that I am not well to make a difference.

8 responses to “College Life with a Chronic Condition

  1. Pingback: How Do I Put This…? « Do I Look Sick?

  2. Great post. It’s so difficult living with an illness that people cannot see and therefore think you are making up.

    Endometriosis my life with you

    • It’s the worst! But so many people fake being sick, and usually the fakers seem more outwardly sick than someone with endo. :/ Thanks for commenting! It’s always nice to meet a fellow endosister. šŸ™‚

  3. endohope

    In many ways I am so thankful that my endometriosis symptoms started to appear when they did – when I was a young adult in my mid twenties and capable of work in good career with a clear path ahead of me.

    If I had started in college or university I would have really struggled to study (I was already struggling with fatigue, but not really knowing why).

    It came to me at a time that was relatively steady, when I had a good wage and an understanding boss. If it had come earlier I’m certain my life would have fallen apart more than it did.

    • I’m so thankful that endo showed up when it did for me. There’s really no good time to get sick, but I think God made it as easy a transition as it could be. I had only just started college, and I was doing community college and living at home to save money. My boyfriend had just proposed to me, so I was secure and safe in that relationship. I don’t know if illness always comes in a way we can handle, or if we’re just good at finding the bright side. But in any case, I’m glad endo came to each of us when it did.

  4. Pingback: Why We Need More than the Student Disability Office | Do I Look Sick?

  5. That really is shocking that you are made fun of. Jerks…

    You have some great information here for anyone going to school.

    Like you said, disability departments are kind of a joke. Schoools provide an entire office meant to accomodate the needs of disabled students and then all they do is give you more work. They woudn’t even send over my documents to my Proffs! I had to obtain my documents, go to the very inaccessable disability office, then treck across campus to all my Proffs to hand out my paperwork. And I was required to do this every semester if I wanted a major perk like sitting up front. wow! No thanks, I’ll just get my seat saved for me. And they were no help with a teacher who wanted to force me to play basketball?? On my crutches?? Ummm no.

    People got paid to do that job, lol. I’m sure the school got Gov’t $$ for that required dept too. Shame shame.

    Do you have such troubles with your disability dept?
    I’m no longer able to go to my classes any more but I’ll pass this along to my Spoonie college friends.
    Hugs

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