Friday, March 22, 2013

What the pamphlets didn't teach me

Some of you are probably familiar with the story of my diagnosis. The day I met with a rheumatologist, he sat with me in a cold, clinical waiting room and read to me from a selection of pamphlets with cheesy names like, "So You Have Rheumatoid Arthritis," and "Rheumatoid Arthritis: An Overview." The doctor presented this literature as if I were a kindergartener circled up for storytime - facing the cartoony pictures of people in pain towards me, he hovered over each word with his pen as he read out loud.

I still have those pamphlets somewhere, and I am often tempted to dig them out. Those little handouts with their idiotic drawings did absolutely zero to prepare me for what was to come. I expected to feel pain and stiffness in the mornings. I expected to work with my doctor to find a medication that would solve all my problems and let me live "a perfectly normal, active life," as one pamphlet cheerfully promised. What I did not expect was to live in constant pain for two years, watching my life crumble into pieces as I struggled just to get through a normal day. Nobody mentioned that I would need my boyfriend to lift me out of bed, walk me to the shower, dress me, and tie my shoes. That I might not be immediately "fixed" would have been nice to know.


Maybe it's too much to expect that this rheumatologist-recommended literature should provide an accurate picture of the disease at hand. After all, the allure of a brochure lies in its manageability and concise, informative text. Autoimmune diseases are different for everyone, right? Maybe the pamphlets cover the bare minimum.

But I didn't learn much that I didn't already know, and I learned nothing at all about what to expect. In the section entitled "Treatment Options," nobody bothered to mention that I'd lose my hair even with a combination of supplements to counteract that problem. While I did read that I might be more susceptible to infections on the drugs most commonly prescribed to treat my disease, I never even suspected that I might languish in my snot and phlegm for months on end after I caught a cold, or that I might have a fever for two weeks and feel like death the whole time.

I feel now, looking back on that day in the rheumatologist's office, that those pamphlets painted a much brighter future for me than the one I am currently experiencing. Perhaps my disease is atypical in its severity and its ability to wreak havoc on my body. Maybe I am overly sensitive and other sufferers don't struggle with the emotions that living with chronic pain has created in me. But I kind of doubt that. The communities that I frequent, both in the blogging world and on reddit, lead me to believe that living in chronic pain is nothing if not a Herculean task. Someday, maybe we'll all be in less pain and able to find that promised "normal" life. Thus far, I haven't been able to get there, despite what those pamphlets told me.

What's the deal? Is there a solution to all this complaining I've done here today? Can we paint an accurate picture of a life with an autoimmune disease that is not only honest but also appropriate for the doctor's office? Of course, I will continue to support bloggers and will continue to blog myself. We act as a supportive, informative and often brutally honest community for those newcomers who are just beginning their journeys, or for those who simply want to find others who understand the complexities of a life in pain. As a group, we can provide the kind of information that short pamphlets do not.

I'd like to hope that as research into autoimmune conditions progresses, so too will research into additional treatment options. I hope that some strong, honest soul is able to march into a doctor's office with the kinds of pamphlets I wish we had today. It's nice to feel positive about a diagnosis and a treatment plan, but for me, it'd have been even nicer to be prepared for the road ahead, instead of losing myself to discouragement and depression two years into the journey.

Let me ask you, those of you who are also sufferers of some sort of chronic illness: did you feel adequately prepared? Did that doctor's office literature ready you for the struggle ahead?

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