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The pain, pitfalls of attending school with invisible illness

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OCTOBER 29, 2018

Sometimes I wake up and I’m not fine.

Perhaps I had a rough night, or perhaps it fell upon me the moment I woke up. Either way, my teeth-gritting pain makes it clear that I am not OK. On the outside, you wouldn’t notice that there was anything wrong with me. I don’t walk with a cane or need hearing aids or have any apparent impediment. I’m thin but not obviously sick or in need of any accommodations.

You might notice the way I sit — upright, like I’m wearing a corset, with my shoulders back and my hands in my lap like a Victorian lady. I don’t sit criss-cross applesauce when people gather on Memorial Glade or fill a room at a party. When our professor decides it’s a nice day for us to have discussion outdoors, you’ll see me shifting my position just about every five minutes, looking like I can’t pay attention for the life of me.

Believe me, I’m trying.

I’m one of the 1600-plus students at UC Berkeley who has a disability, but not one you’re likely to notice. The concept of invisible illnesses is one that we’re still just beginning to talk about. Students with invisible illnesses walk the halls of Wheeler or wait for one of its sketchy elevators. We turn in essays and go to class, even when we’re having bad, painful days and type from hospital beds.

I was diagnosed with scoliosis when I was about 5 years old, after my mom saw the curvature of my spine. She noticed the bumps against my skin going off in their own directions one day while she was drawing me a bath. The surgery that I had when I was 13 to correct the curvature in my spine was severe and experimental. The good news is that if someone tells me I have a stick up my ass, I can inform them that they’re actually titanium rods, thank you very much. And those rods have done their job very well. My spine is straight, or straighter than it was, even if I am forever an inflexible Barbie doll.

When I applied for student housing at UC Berkeley, I’ll admit I was hesitant to apply for any sort of disability services. Comparatively, I’ve felt quite lucky, and loathe to suggest that there was anything I couldn’t handle. The one thing I did ask for regarding my physical disability was housing close to campus. Knowing I would be walking everywhere with a heavy backpack, I wanted to ensure that I had a quick route back to my bed and heating pad. This is because while I’m totally fine most days, there are times when my body will suddenly just give out, and I need to lie down.

I was granted housing at Stern Hall with my own room and even the chance to bring my guinea pig as an emotional support animal for my anxiety. I was thrilled. But, as is the case with university housing, it became clear fairly quickly just how inaccessible the housing could be for students with mobility issues.

Of course, I am always aware of my privilege of still being able to go to school. There’s always that question, too, if you’re “disabled enough” to even identify as disabled. For most of my life, I did not. A friend of mine with a similar back problem is unable to sit in a desk for the amount of time necessary to finish a full class, impeding her ability to finish her degree.

For the most part, I can handle this. On good days, my discomfort is distracting, and on bad days, I’m in tears.

“How long can I do this?” I remember asking my best friend toward the end of last semester. “Can I sit in a desk like this for four or more years of graduate school?” I wonder if I can have an office job if I sometimes have to sit in the chair like a kid, shifting my weight and looking to the rest of the world like I don’t take anything seriously.

It’s easy to fall down these spirals of fear.

Add this to any sort of emotional or mental disability such as anxiety, and students can feel even further isolated from their peers. School is stressful enough without the added disadvantage of disability.

I finish my undergraduate education in December, and I know that the next step is going to bring with it its own challenges, as all steps do. But I’m proud of myself for getting this far. For all of us who make our way through this world and through UC Berkeley with invisible illnesses, we also carry with us invisible strength. And I’m proud of you, too.

Contact Lauren West at [email protected].

OCTOBER 29, 2018