by Sierra Williams, PhD and Mangum student program participant- SICB 2021
“Do you wish you had never gotten sick?” my mother asked me.
The question made me hesitate. My illness had destroyed my childhood and robbed me of my peace of mind. However, I wasn’t sure if I would be the same person sans illness. Would I have made the same choices? Would I still be studying immunology? Would I be in the STEM field at all? My disease had been a part of me for so long, trying to remember a time without it was like trying to remember a dream.
“Tribulation builds character,” I told her. I wasn’t sure if I believed it. “If I was offered a cure now, I would take it.” Taking a cure now wouldn’t erase the past ten years as a student with disabilities.
It wouldn’t erase the fear I felt when I was cornered in a high school bathroom and mocked by a bully while her friends held the door shut, rendering me unable to escape as I was wheelchair-bound. It wouldn’t erase the anger and pain I felt when the person I thought was my best friend told me she didn’t have the time or energy to deal with me anymore. It wouldn’t erase the hurt I had to bite back when skeptical doctors wondered if I really needed to be on that much medication. It wouldn’t erase the outrage at having campus parking services call the state Department of Transportation, twice, to make sure my disability placard was registered in my name. Despite the Hollywood tropes, those experiences didn’t make me strong. I didn’t forgive these people and move on. However, these experiences afforded me a unique perspective on prejudice, and the cost of ignorance is too steep a price to pay if I were to wash the slate clean.
For a moment, imagine you’ve just moved into a house. After a few days, you notice mold growing on the wallpaper and find out it’s in the walls. You hire someone to get rid of it and they discover you also have rats. The rats chew through everything, including the cord to your router, leaving you without internet. Now, you have mold, no internet, and rats. My disability is like that house: not one disease, but a rapid succession of issues that bleed into each other. One diagnosis led to another. Fixing one problem made another more obvious.
I suppose I should start in chronological order. When I was fifteen, I was diagnosed with postural orthostatic tachycardia syndrome (POTS), an autonomic nervous system disorder that presents as low blood pressure and rapid heart rate with changing posture. I would lose consciousness every time I stood, so I was confined to a wheelchair for months until I was diagnosed. I was also misdiagnosed with Mitochondrial Disease. It took me eight years to seek out a new diagnosis.
In 2018, I moved to Oklahoma for my Ph.D. I had double-majored in wildlife biology and psychology, so my previous experience with human immunology was limited. Initially, I was preoccupied with many of the normal concerns and responsibilities that others in my cohort shared, like teaching labs, writing grants, coming up with my dissertation design, combatting imposter syndrome, having a social life, and attempting to balance it all. However, the more course material I absorbed, the more I tried to apply it to my diagnosis. I discovered I was a sickly infant and took antibiotics for the first three years of my life before surgery to correct the problem. As someone who ironically studied early life stress, I understood the implications. I was convinced whatever issues I had were not genetic. Eventually I sought out a second opinion from a rheumatologist.
Like many others who suffer from chronic fatigue symptoms, nailing down a diagnosis was a lengthy, painful process. Many women I know had doctors assure them their fatigue was a symptom of a neuropsychiatric illness, not a chronic disease*. My rheumatologist diagnosed me with fibromyalgia, a chronic pain disorder. I was conflicted about the diagnosis because there isn’t really a way to test for fibromyalgia. It’s sort of a fallback diagnosis when all the other options on the list have been crossed out. The treatment had mixed results. It helped with the pain, but it made me so nauseous I lost over 10% of my body weight. I could see the bones on my sternum.
That winter, in the height of the pandemic, my rheumatologist noted my purple, ice cold hands. This usually happened when the weather dipped below seventy. She called it Raynaud’s Disease: the random constriction of small blood vessels in the hands and feet, usually with cold. But I can feel it right now, as I write this, in June in the middle of our triple digit heat wave, simply because I’ve been walking on the wood floor without socks.
With the Raynaud’s I was granted a handicapped placard. I was grateful, particularly when the weather was cold, as I was constantly monitoring my hands and feet for early signs of gangrene. I didn’t anticipate the backlash that would come with the placard. I’d never really thought of myself as disabled. I suppose to most people, I don’t look disabled. A woman stopped me in the produce section a few months back to tell me I didn’t look disabled. I told her exactly what she did look like, which I won’t repeat here.
Last month, I had a rapid deterioration in visual acuity. I was diagnosed with keratoconus, a rare progressive corneal condition. I was presented with two treatment options: wear contacts with changing prescriptions until I inevitably need a cornea transplant or undergo experimental surgery. I chose the latter. My surgery will be in July.
Most of the time, I don’t feel any different from my cohort.
Most of the time, I feel like disabilities are being taken into consideration, at least within my own experience in STEM. However, it’s the times when I do feel unaccounted for that make me realize this field still has a fair amount of growth left to do.
Resources for students with disabilities aren’t included on my own university’s diversity and inclusion website nor is there any mention of them. There are minimal broad scholarships for students with disabilities*. Many of us who are graduate students lack reasonable healthcare, so our conditions go untreated and unmanaged.
Scientists are touchstones for change, and we need to do better. It’s estimated that one in four Americans have a disability. Yet they accounted for only 9.1% of doctorates awarded in 2019. Progress starts with awareness. By writing this post, I hope every person who reads it understands that living with a disability means fighting your demons every day.
We can’t take a break from our bodies, no matter how much pain they cause us. We are limited by our bodies, not our minds. I hope any able-bodied reader will walk away from this post with more empathy, not sympathy.
For those of you who are not able bodied, like me, I hope you know your disability is yours alone and doesn’t need to conform. Those of us who are disabled in STEM have fought against incredible odds to make it this far. So, keep fighting.
My story is only one voice among millions. I encourage you to look into #DisabledInStem stories on Twitter.
Connect with Sierra via (@Livebythelab)
*There are scholarships for students with specific disabilities. Many disease foundations have their own scholarships they award to students
1) The Unwell Woman- Misdiagnosis and Myth in a Man-Made World- by Elinor Cleghorn
2)National Center for Science and Engineering Statistics. 2021. Women, Minorities, and Persons with Disabilities in Science and Engineering: 2021. Special Report NSF 21-321. Alexandria, VA: National Science Foundation. Available at https://ncses.nsf.gov/wmpd.
One in five people in the United States lives with a disability. Some disabilities are visible, others less apparent—but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people.