Brijana Prooker

The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. This post is not intended as medical advice.

I take hydroxychloroquine (Plaquenil) for my autoimmune disease. Ever since President Trump and Dr. Oz promoted it as a miracle cure for COVID-19 — based on an unproven theory and very limited study that has since raised serious red flags—my health has been at risk. Like toilet paper, people have been hoarding it.  According to the Annals of Internal Medicine, pharmacies reported hydroxychloroquine shortages within 24 hours of President Trump tweeting about its so-called game-changing benefits, endorsing it, along with the antibiotic azithromycin, as a magical solution for the pandemic.

Suddenly, reports emerged of doctors writing hydroxychloroquine prescriptions for themselves and their families and friends, even going so far as to fraudulently claim that perfectly healthy, able-bodied people had Rheumatoid Arthritis, an autoimmune disease for which the drug is often necessary. Take a moment to let that sink on. Due to the president of the United States waxing poetic about a drug proven to help treat autoimmune diseases — and still unproven to treat COVID-19 —those who rely on it to survive are finding themselves without it. Because people without any symptoms of COVID-19 are hoarding it as a “just in case.”

I take hydroxychloroquine to treat Sjogren’s syndrome, a systemic autoimmune disease that has rendered me disabled, with a serious case of urticarial vasculitis that causes severe chronic pain. Hydroxychloroquine is by no means a cure (I still suffer regular vasculitis flares and what I’m able to accomplish in a day is limited) but without it, I could go back to being bedridden, unable to write, walk my dog, play with my cat or do any of the things I love. After trials and errors with many, many different drugs, hydroxychloroquine is the best, least dangerous drug I can take for my incurable condition. (That is not to say it’s without side effects — by no means.) But when I called in my refill for it this month, my pharmacist here in Los Angeles told me she didn’t have any. She reiterated what I already knew — doctors were prescribing it for people who didn’t really need it, based on fear and misinformation — and said she hadn’t been able to get any in stock. I’m not alone in this plight.

My online support group for urticarial vasculitis was abuzz with women facing my same predicament. 80% of all known autoimmune diseases in the US are suffered by women. Like Carrie Bradshaw, I can’t help but wonder — actually, no, I’ll make a definitive, only me statement: If 80% of men suffered from a serious illness only alleviated by a very specific drug, I highly doubt it would be so easily snatched away.

Anessa Joy Opsahl, a woman from Iowa who takes hydroxychloroquine for Rheumatoid Arthritis in addition to urticarial vasculitis, says “I couldn’t get mine filled for almost a month. Which caused me to be in a complete flare-up multiple times. I finally got it in my hands this past week.” But with one caveat: Her doctor told her to cut her dose in half.

Sarah Lively-Lopez, a woman from Southern California who has been taking hydroxychloroquine for 12 years to treat her vasculitis, shared the most rage-inducing email with me. It stated that Kaiser, her insurance company, was restricting the use of hydroxychloroquine to “inpatient use only.” Meaning that once she finishes her last remaining bottle, Lively-Lopez would have to be hospitalized to get her hands on the drug that’s been managing her vasculitis for over a decade.

This is not an unlikely possibility. Any of us autoimmune patients could end up hospitalized if we don’t have access to the medication we need to survive.

Randi Niklekaj, a woman from Minnesota who identifies as a #LupusWarrior, says, “We rely on hydroxychloroquine to stay stable, healthy, alive. This is no joke.”

In a statement from the Arthritis Foundation, Michelle Petri, MD, a rheumatologist who treats systemic lupus erythematosus (SLE) at Johns Hopkins University School of Medicine, says “It should not be forgotten that SLE is the fifth or sixth leading cause of death in African-American and Hispanic-American young women. Hydroxychloroquine is the only SLE treatment shown in multiple studies to improve survival in SLE.”

Yet, according to Tarra Rondeau, a vasculitis patient in Florida who is good friends with a hospital pharmacist, “doctors are giving it to every patient who comes in with a cough or fever.” This leaves those of us who need it to combat chronic illnesses out of luck and out of medication, which is terrifying and beyond infuriating.

I think we can all agree that finding a cure for COVID-19 would be incredible. Those of us with autoimmune diseases want this more than ever, as many of us fall into the COVID-19 “high risk” category, making us more susceptible to getting it and less capable of fighting it off.

It should be noted, though, that The Washington Post gave Trump Four Pinocchios for advocating for an “unproven treatment (that) provides potentially false hope and has led to shortages for people who rely on the drugs.” And that a new French study, published April 14th, found that hydroxychloroquine did not help patients with coronavirus and caused serious heart complications — despite Dr. Oz’s continued minimization of the drug’s very real risks —requiring eight pneumonia patients to stop taking it.

If any incontrovertible science actually comes to show that that hydroxychloroquine can benefit COVID-19 patients, then a plan should definitely be put in place to ensure they have access to it. But it should not be taken away from autoimmune patients. Our lives are not disposable.

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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.

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I’ve never been drunk, never once succumbed to peer pressure to smoke, do drugs or get high.  I’m not a partier — never have been, never will be.  Up until three and a half years ago, the strongest substance I ever took for pain relief was aspirin, despite having a chronic illness and chronic pain since I was seven years old.

I used to take pride in toughing out the pain that all but consumed me.  Until I spent half a summer unable to sleep because the pain was so torturous it took my breath away.  Most of my body was swollen and purple, a result of broken blood vessels and blood leaking under my skin from vasculitis, and I could no longer do any of the things I love, including writing and walking my dogs.

When I ended up in the emergency room for the fourth time that summer, a nurse told me doctors had no idea how to treat my autoimmune disease, but I deserved to be treated for my pain.  He put morphine in my IV and I experienced pain relief for the first time in my life.  It was a revelation.

I felt like I could finally breathe again (had I ever truly breathed before, a breath that wasn’t shallow or gasping, shaky or desperate?)  Without so much pain to focus on, a gnawing question that had been buried in my subconscious for years finally reached the surface:  Why exactly was it that I’d felt heroic — like I was racking up karma and brownie points and moral superiority — by allowing myself to suffer, minute after minute, day after day, year after year?

I would soon realize the answer.  Society is just fine with women suffering.  What society is not fine with is women choosing what we will and will not tolerate.

Experiencing Pain

When I got my first period, the novelty wore off after a couple days, and I was suddenly struck with a sinking realization: I’m going to have to experience painful menstrual cramping every 28 days for the next 30-some years?!

In the grand scheme of things, it might not seem like that big a deal, but it sets a precedent: Women experiencing regular menstrual pain is just a given — part of being a woman.

It’s not too big a leap for me to come to assume that it’s just “part of being a woman” for me to suffer in silence — for more than two decades — without taking anything stronger than aspirin for my autoimmune disease.

It’s not polite to talk about period pain.  But at least the medical community acknowledges it exists.  It took 10 years for doctors to acknowledge my autoimmune disease symptoms weren’t “all in my head” — a common line used by doctors when dismissing women’s pain — and another 10 years for doctors to actually treat my pain.

When you’re told you’re “crazy” often enough, you either stop speaking up, or you find another method to cope.  My method of coping was to smile through the pain and consider myself Wonder Woman, even though the pain was so excruciating I often feared I’d pass out in the middle of a conversation with friends, my heart racing so much I could barely breathe.

Speaking Out

Six months ago, President Trump declared the opioid epidemic a national emergency.

And suddenly doctors are telling me I should go back to just toughing out the pain, even though 78% of the people who misuse opioids were not prescribed them by a doctor and even though the rate of addiction to opioids by chronic pain patients with no history of drug abuse or addiction (like me) has been calculated at only 0.19%.

I argue my case by quoting the emergency room nurse who first gave me morphine — if you can’t treat the disease that causes my disability (Sjogren’s Syndrome) then don’t I at least deserve to have my pain treated so I can continue to write and walk my dogs?  I often point to the sign on the exam room wall that says patients have a right to pain management.  But doctors ignore the statistics, glaze over the sign and dismiss my plea not to have my quality of life rescinded.

Why?  Because society has no qualms about women suffering. It’s just “part of being female.”

Except it doesn’t have to be.

Pretending I’m not in pain doesn’t make me Wonder Woman.  But speaking the hell up about the gender bias in medicine and refusing to let pain be a given?  I’m pretty sure that’s the definition of an Amazonian warrior — and I’m recruiting an army.  Join me.

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