May is Myositis Awareness Month – and if any disease needs awareness, it’s definitely myositis.
According to The Myositis Association, this autoimmune disease-causing inflammation of the muscles affects only about 50,000-75,000 Americans. (A more precise number is difficult to pinpoint, as many individuals go undiagnosed for several years, largely due to symptoms varying.) Subtypes include polymyositis – with which I was diagnosed at age 22 – as well as dermatomyositis, which has skin involvement; inclusion body myositis, which tends to strike older people, and juvenile myositis. Prior to my diagnosis, I had never even heard of it, nor had any of my family or friends.
In February, the disease earned a moment in the media spotlight when musician Peter Frampton announced he had been diagnosed with inclusion body myositis, a form of the disease that is more common among men, and persons over age 50. Articles about Frampton also included basic explanations about the disease’s symptoms and prognosis. Nonetheless, many well-intentioned readers left comments on articles and Frampton’s social media, wishing that he “get well soon.” Unfortunately, barring a sudden scientific miracle, that isn’t going to happen with IBM.
The muscles primarily affected by myositis are the ones closest to the trunk of the body. This means that while I can walk on level ground, I have a great deal of trouble climbing stairs or rising from a chair. The muscle damage is often accompanied by chronic pain and fatigue. Some people also have trouble raising their arms over their heads, lifting objects or have trouble swallowing (dysphagia).
Onset is often rather abrupt – in my case, I happened to be halfway up a flight of stairs at the library when I suddenly lost the use of my legs. Panicking, I managed to grab the wooden railing an instant before I would have fallen backwards some distance. As it was late winter, the staff members who hurried to my side naturally assumed that I had slipped on some slushy residue tracked in by patrons. But it was obvious to me even then that something else was going on.
Until that point, I had been blessed with good health. I had never broken a bone or even had a cavity. Like most others in my situation, it had never occurred to me that life might abruptly become different, that I should cherish each day where I could do whatever I needed or wanted without a second thought.
Over the 16 years that have passed since that day at the library, I’ve gone through an ordeal that many people can’t even imagine. I’ve tried a wide array of prescription medications, as well as a myriad of treatments ranging from water therapy to acupuncture to CBD. I visited more “specialists” than I can accurately recall. But for the most part, I’ve learned to make my peace with the fact that I will most likely always live with chronic pain and mobility issues for the rest of my life. There is no medication or treatment that does much for me. What I now consider a “good” day is likely a pretty bad day for a healthy person.
That said, I don’t often let myself dwell upon the negatives. To be honest, I’ve gone through the gamut of “why me” moments over the years, the anger at missing out on normal things and having to adapt essentially every aspect of my existence. I wouldn’t be human if I hadn’t. But at this point, I’ve also been living with myositis long enough to know that complaining and shaking my fist at the gods isn’t going to accomplish a single thing, other than add to my own unhappiness. So I do the best that I can – all the while remaining hopeful. Who knows? There are new and incredible discoveries in medicine constantly. Who’s to say the next one won’t be for myositis? In the meantime, I continue to use my voice in the hopes of educating others, sharing my experiences for better understanding and acceptance.