My disability requires me to carry memory foam pillows with me everywhere I go. My disability is invisible — the pillows are not.
At a recent cardiology appointment, a nurse made fun of my memory foam pillows, assuming I was a “lazy, stuck up princess” rather than a patient with vasculitis whose veins break easily and often (the pillows act as a shield between my veins and hard surfaces when I sit down — attempting to prevent internal bleeding).
This wasn’t the first time my autoimmune disease — and the chronic pain it causes — was dismissed. I started experiencing painful autoimmune disease symptoms when I was seven, but it took a decade for doctors to take them seriously.
When I repeatedly woke up in the morning to find an eye swollen shut, my pediatrician said it was from spider bites (though I now know it was from angioedema, a swelling that in recent years overtook my throat, landing me in the ER because I couldn’t breathe).
As a child, when I went to the doctor with painful red welts on my legs, I was told to use a dye-free detergent to avoid a rash that, when I was in college, doctors discovered was not a rash at all, but vasculitis — causing blood splatters under my skin.
What I now know was chronic fatigue from my immune system repeatedly attacking itself, was deemed deliberate delinquency by teachers and principals alike. I missed so much school my last year of junior high that I was forced into homeschooling.
I gained admittance into a liberal arts high school, only to be banished to a school of bad seeds toward the end of my first year — despite having straight As — because I was missing too much school. My mom and I had to appear before the school board and plead to be let back in.
When my mom fought my case, the school board thought she was lying — using my being sick as a ruse for what they’d determined was juvenile delinquency. If I were really so sick, they said, then what did I have? Why didn’t I have a doctor’s note proving it?
Of course we couldn’t answer. Doctors said I wasn’t sick except for bad allergies.
And I was too shy to argue. When changing my detergent didn’t help, I was told to wear all-natural fabric. When I still got giant welts — which often caused my legs to swell to double their size — I was told I must just have “really sensitive skin” (not exactly a revelation — or a helpful medical diagnosis). When I asked doctors why the red welts turned into long-lasting bruises and why it was so horribly painful, doctors told me I was “too young” to be in so much pain.
Remarkably, that inane statement did nothing to actually reduce my pain level. Nor did doctors telling me I was “too pretty” to be in so much pain which, according to the National Pain Report, is a common excuse used by doctors when “diagnosing” — and denying treatment — for women in pain.
I was finally allowed re-admittance to my high school only if I promised not to be late or absent.
So I covered my legs with jeans to hide my swollen red and purple skin, got used to pain being my constant companion, and graduated with honors.
By the time I was finally diagnosed with an autoimmune disease in college, my condition had gone untreated for so long — and progressed so detrimentally — that doctors told me I had the worst blood results they’d ever seen and I was going to die unless I received immediate treatment. Quite a shocking turnaround — from “it’s all in your head” to “you’re going to die”.
I’m still alive, proving doctors wrong on both counts.
Although I have permanent nerve damage because it took so long for doctors to take my symptoms seriously. Sometimes I wonder if society would treat me differently if I had a more visible disability. If I carried a cane or used a walker, would I elicit more sympathy — or at least less mockery — than I experience walking around with (often faded and mismatched) memory foam pillows? I can’t answer that question because I can’t judge anyone’s experience, anyone’s disability, but my own. But what I will say is this: it’s easy to make fun of someone who carries pillows as accessories, but should not be so easy for the medical community to deny women’s pain.