A few months after my lupus diagnosis, I found myself at the kitchen table overwhelmed and depressed, staring at a row of prescription bottles. Before getting sick, I was always against taking drugs. I rarely took over-the-counter medications, other than ibuprofen for menstrual cramps or Imodium for you-know-what. So on this particular day, seeing the bottles lined up before me, I felt weak. They reminded me that I was sick, that without them I would suffer and struggle. Without the pills, I would be most certainly worse off. Quite simply, I needed these pills to live — not necessarily to keep me alive — but to keep me functioning.
This dependence terrified and angered me.
I write speculative fiction and sometimes my imagination goes wild. When I realized I had to take these meds to stay healthy, my thoughts led to nightmarish scenarios, the kind you’d often see in SF literature and disaster films but with a chronic illness twist. What if there was an apocalypse? Where and how would I get my meds if the earth was a wasteland? Would I desperately have to dig through the rubble of an old pharmacy? Or what if I were transported to another dimension? Would they be able to treat me? What if I found a cure in an alternate universe? Would I then be responsible to bring it to our world if I could make it back? Or what if Doctor Who chose me to be a companion!? [Okay – how cool would it be if the writers of the show actually created a disabled companion?] How would the Doctor deal with a lupie who sleeps a lot and can’t be in the sun? Would he take me only to dark, shadowy planets with temperate climates? Would he try to help me get better and travel to the future (the near future, I hope) for a cure? Is the TARDIS equipped with comfortable beds, ADA compliant toilet seats and shower bars, and a closet full of UV protective clothing?
Aside from those fears, my true feelings were that of anger and helplessness. So on that day, after staring at those ugly orange bottles for too long, I started throwing them one at a time. Some bounced off the carpet, a couple hit the wall which popped the lids off, scattering pills on the floor, shattering the others. What a mess. It was a stupid, immature reaction. I didn’t even think about how much those pills cost until they fell out of the bottles and then I cried. My coping skills pretty much sucked at that time and that response was something I could have controlled. But I felt on the verge of losing it and I needed to act out in some way, to let off some steam, to rebel against the inevitable, to fight it all in some small way. With no one around to witness my foolishness — whiz, bang, pop, crack!
After that, it didn’t take long for me to realize that these pills gave me a better quality of life. They took some of the edge off the pain and provided insulation from lupus flares. Over the years, I’ve been diagnosed with additional illnesses (“Where’s there’s one autoimmune disorder there’s often another!”) which has meant more medication, more pills to count out and organize every week, more visits to the pharmacy where every one knows my name and has my prescriptions ready by the time I reach the counter.
I think part of the anxiety about taking meds is how other people will judge you. They question Western medicine, Big Pharma, which is fine. But they don’t always take into account that it’s not all evil corporate practices and lies. These same people might suggest that you aren’t doing enough to stay well, that you are naive if you don’t believe that doctors and pharmacists are pill-pushers, that a placebo or dietary supplement would work just as well. While these are things you might consider, the best thing you can do is to get information that is based on facts and clinical trials. Have an advocate help you research, discuss with your doctors why you need these meds, how they work, what are the side effects. A pharmacist can also provide further information.
For those of us who have been sick for a long time, who have done our research and asked our doctors all those questions, we can’t deny that these medications not only make us feel better but they save our lives. Those medications which have been carefully researched and tested — they work! They don’t always offer a cure, they might have some weird side effects, or you might have to try several different ones before finding the right fit for you, but at the end of the day they make it easier to manage our illnesses and possibly prevent further damage to our bodies. So don’t stop taking your meds just because others may be critical of your ability to take care of yourself or challenge what your doctors think is best for you. These folks are not doctors or scientists and I bet that most of their information is only anecdotal. [I’ll discuss this “fake medical expertise vs your real illness”in next week’s post You Said the Wrong Thing. Again.]
Over the years, I’ve experienced the benefits of these medications. Evenutally, I came to the realization that my belief that only a weak person would take meds wasn’t anything but pride. I thought that strength meant complete self reliance, stoicism, hiding how awful I felt, not seeking help of any kind, pushing through the pain or fatigue even when I couldn’t. How scared and small-minded I was back then! Those beliefs only led to more pain and suffering and a sense of isolation. I’ve learned that strength isn’t chastising yourself for taking pills or pretending that everything is okay and putting on a brave face for others. Strength comes in knowing when you need help, asking for help, and being open to receive that help.
Almost ten years later, I have to laugh at myself when I remember how I could barely swallow one pill. It took me forever to take all of my pills, one at a time, and some I couldn’t even get down. But along the way I learned some tricks like using a straw to make it easier to swallow or eating something sweet beforehand. Today, the number of pills I take has doubled and I can wash down several pills at once without thinking about it.
I think that’s a pretty neat trick.
Maria Deira has lupus, fibromyalgia, sleep disorders, and a long, sad list of other chronic and invisible illnesses. Her fiction has been published in A cappella Zoo, Fiction Southeast, Word Riot, GigaNotoSaurus, and Strange Horizons. Maria is also one of the editors of And Then I Got Sick. You can find more of her work at Writing, Writing, Lupus Fighting.