The problem with having two (or more) autoimmune conditions is that the treatments for one can exacerbate the other. I have failed Arava (or, more truthfully, Arava has failed me). Now the only option left before going to biologics (which my insurance will only partly cover, plus they have a fail-first policy, hence the endless wait) is sulfasalazine, which may resolve my GI issues and RA symptoms, but could potentially make my lupus symptoms much worse. At this rate, I almost feel like prednisone is easier and safer. What a mess. And why do I still feel like it’s my fault that the treatments don’t work instead of the other way around?
First and foremost, I started this blog as a form of therapy: a place where I could voice my hopes and fears, and work through some of my frustrations. Last winter, when I was so sick, I felt a sense of hopelessness creeping in, and I needed to do something about it. This blog was my way of taking back a little control, and re-narrating my life in a way that made sense. I began to piece together a new sense of self that had room for the woman I know as “Megan,” and the new identities and labels that were crowding her out: patient, chronically ill, lupus, RA, depressed, unhappy.
Somewhere along the way, I started “meeting” other people with chronic illnesses, through their blogs and twitter, and suddenly I had a readership (perhaps mostly fictional, but a few hardy souls kept reading) and a sense of connection. The load seemed somehow easier to bear. And some of the labels started to seem less and less a part of me, while the others felt more manageable. As I continue to blog, I find that it’s the chance to engage and connect that keeps me coming back, as well as the knowledge that there may be someone out there like me, feeling scared and alone, who will read my words and realize that she’s not the only one, that her pain and fear are real, but that there is life with chronic illness.
When I was younger, I made several blogging attempts and failed each time. I had the desire to write, but I didn’t know what to write about. And so my blogs languished in corners of the internet, mildly solipsistic and eventually abandoned. This little experiment–Objects in Mirror are Closer than They Appear—is now just over a year old. I won’t claim it doesn’t have its solipsistic moments, I am human after all, but I feel like I finally have something to say and the place to say it. Plenty of days I feel like I have more to say than I will ever be able to contain in these little snippets of my perceptions, thoughts, and feelings.
So thank you for reading, whomever you are, and know that I write for you, even if I don’t know you yet.
This post is part of the WEGO Health Activist Writer’s Month Challenge (HAWMC). During the month of April I will be writing a daily blog post related to health and health activism, often inspired by or in response to a prompt. For more information on HAWMC, visit the WEGO Health blog.
Back in my high school days I was a bit of a goth. I wore lots of vintage clothes—black and velvet, naturally—and I even had a black wool cape that I wore on chilly days in place of a jacket. If I had a superpower back then, it seemed to me to be a unique talent for antagonizing my fellow high school students. Yet despite my performative disdain for my classmates, I somehow managed to retain the nickname that had been following me for years: “Mighty Mouse.”
I’m not particularly mousey, rather it was my willingness to stand up against the school bullies that earned me the nickname. I couldn’t bear to see another child, especially someone who was smaller, or disadvantaged because of a physical or mental disability, picked on by a bully, and so I frequently stepped in to intervene. Or at the very least I tried to befriend the child who had become a target, and offer them friendship and compassion, if not protection.
If I have any “superpower” that has been honed as a result of dealing with chronic illness (apart from my supernatural ability to argue with insurance companies…), it has been this sense of compassion, and desire for justice and human dignity. Certainly I can be as misanthropic as the next person, especially when I see people behaving in negative or destructive ways. But like the quote I posted yesterday, being ill has taught me to accept that we all have our battles, and that just because pain is relative doesn’t mean that it’s any less disabling or terrible for someone else.
“Be Kind; Everyone You Meet is Fighting a Hard Battle”
I’ve seen this quote in multiple versions, with several different attributions. It often seems to get attributed to Plato, but it sounds a little too touchy-feely to have come from him. I did a bit of investigating and it seems that the quote has gone through quite a few variations, but likely originated with a nineteenth-century Scottish theologian named John Watson (psuedonym “Ian McClaren”).
Regardless of the origin of the quotation, is one of those sayings that helps me keep my patience when I find myself becoming frustrated with other people. If I have my battle with chronic illness—which so often remains invisible to others, sometimes intentionally on my part—then how many other people have their own invisible battles with trauma, abuse, mental illness, physical illness, etc? Every time I start to feel like someone is attacking me, or snubbing me, or ignoring me, I ask myself, “What’s going on in her life that might be affecting our relationship?” It’s so easy to jump to the conclusion that someone is attacking us out of spite, because they want to hurt us. In reality, it’s likely that they are so caught up in their own battles that they don’t realize how their actions affect those around them. It takes practice, but it is so much easier to react with kindness instead of bitterness. Suddenly some of the paranoia that comes from living in a hostile world just falls away. Most people are too caught up in their own heads to make the effort to hurt anyone. Give them the benefit of the doubt.
The first version of the prompt for the opening day of Health Writer’s Month Challenge asked me to imagine constructing a time capsule related to my health condition. The second version asked me to consider a time capsule that tells my story. So I’m going to do a little of both.
Health Time Capsule. Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?
Hmm. 2112. One hundred years is a long way off, and who knows what sort of technology will be available by then. I think the thing I want to capture in my time capsule is the excitement of the scientific discoveries that have been made in the past three decades, but also that there is still a great deal about illness that we do not understand, particularly autoimmune and rheumatological diseases. I would include articles about the development and release of the lupus drug Benlysta, as well as some materials to provide background on the issues of race, class, and access to treatment that Benlysta (and similar biological medications) raises in contemporary US culture.
Historians of medicine often puzzle over the way certain diseases were recognized (or not recognized) and treated (or not treated) in the past. I want to provide an archive to help explain how we early-twenty-first century people conceptualize rheumatoid arthritis and lupus, both in terms of the diagnosis and treatment of individual people, as well as how patients are treated as a group. I would include my own writing about my narrative of diagnosis, and my ongoing struggles during treatment, as well as images and stories of myself and others. I would primarily include printed materials (on acid-free archival paper, ‘natch) and I would also include video footage, though with the understanding that there might not be DVD players (or that the disc itself might be unreadable) in the future.
In the documents about my own experience, I also want to describe the complicated mass of phenomena that come together to form the medicalized body of a woman, including the history of hysteria, conversion disorder(s), and somaticisation as an issue of women’s physical and mental health; the absence of women from many clinical trials, particularly in the mid-20th century; and the political conflicts over such disparate issues as access to birth control, privatized health insurance, and medicare repayment (which affects access to rheumatological care). I want to provide a snapshot of what it means to be a woman, to be American, to be chronically ill, and to be disabled at this moment in history.
I want my time capsule to capture the struggles and the hopes of patients with rheumatoid disease and lupus. I hope that in 100 years these diseases will be cured—by advances in genetics and in the technology that has led to the development of biologic medications. If this is the case, I want my capsule to provide a window in to the experiences of individuals whose lives were ravaged by disease, and yet lived productive and even joyful lives despite their illnesses.