I am very open about the various illnesses I struggle with, as well as my Asperger’s Syndrome, which is not an illness. I share my experiences in an effort to educate the unafflicted and to find camaraderie from those who know firsthand what I’m talking about. I usually get good feedback from these posts, and private messages thanking me for sharing my story when others don’t feel comfortable going public with theirs.
You Don’t Deserve That Diagnosis
Last night, my referrer log led me to the first discussion thread I ever found created specifically to bash me. It hurt. I suppose I’m lucky to have come this far without encountering this previously, but I didn’t expect people with the same diagnosis to be so judgmental.
Apparently I rubbed some people the wrong way with my Getting Up on Time post. Why? Because I’m not sick enough for them and they were offended that I dare to claim I have CFS. Here’s the thing about Chronic Fatigue Syndrome: it doesn’t affect everyone the same way. Many of the people on this ME/CFS forum are severely disabled, spending most of their lives bedridden. This is my greatest fear…that my CFS will progress to that level. But being completely disabled is not a requirement for a CFS diagnosis.
As a matter of fact, the CDC points out:
People with CFS function at a significantly lower level of activity than they were capable of before they became ill. The illness results in a substantial reduction in work-related, personal, social, and educational activities.
My life was much different before CFS crept up on me, and the symptoms seem to be getting progressively worse as I get older. There are a lot of things I have to say no to. But there are things I can still do, too, as long as the timing is right. As the CDC also mentions:
CFS often affects patients in cycles: Patients will have periods of illness followed by periods of relative well-being. For some patients, symptoms may diminish or even go into complete remission; however, they often recur at a later point in time. This pattern of remission and relapse makes CFS especially hard for patients to manage. Patients who are in remission may be tempted to overdo activities when they’re feeling better, but this overexertion may actually contribute to a relapse.
But the fact that I can have some semblance of a normal life led some people to feel justified in questioning my diagnosis, calling me (essentially) an attention-whore who is giving CFS a bad name. I was accused of perpetuating the misconception that CFS is a psychological or behavioral issue and not a physical illness; I guess they don’t understand that some people have co-morbid psychiatric and neurological disorders that complicate a singular diagnosis. Depression can trigger my CFS, and CFS can trigger my depression. And being on the autism spectrum complicates all of that. I can’t separate one disorder from the others because they are intertwined aspects of my health and well-being. (In that little chart up there, I’m in the little overlapping wedge above the blue line.)
Look at What I Put Up With
Listen, I know I’m “lucky” I’m not as sick as other people with my diagnosis. But you don’t see cancer patients picking on someone else whose tumor isn’t as big or who “only” has to have chemo instead of the triple threat of surgery, chemotherapy, and radiation. So why do people with chronic illnesses feel the need to participate in negativity in the form of oneupmanship? I know it’s not just CFS. It happens in communities for patients with fibromyalgia, mood disorders, cystic fibrosis, multiple sclerosis…
I get that chronic illness sucks. TRUST ME. I get that. And if you have something more debilitating than I have, you have my sympathies. But that doesn’t mean I’m suffering with my limitations any less than you are, and what I’ve lost means as much to me as what you’ve lost means to you, even if you’ve lost more than I have. A loss is still a loss, and suffering is still suffering. Nothing about this is fair, and all we every really know is our own personal experience. Anything else is guesswork, with empathy for another person’s situation or without.
Let Me Tell You About MY Pain
Maybe it’s a carryover from having “normal” non-chronically ill people try to express empathy by sharing their [relatively trivial, to us] physical complaints. I remember how tired I felt after staying up all night doing stupid things in college, and it cannot compare to the bone-deep fatigue of CFS. And even though I suffer both muscle pain and joint pain at varying levels of severity, I know that my pain episodes cannot compare to what my friends with fibromyalgia suffer through every single minute of every day without relief. That’s the biggest difference between chronic illness sufferers and everyone else. You experience a thing far differently if the symptom is periodic versus having no relief from it ever. I’m lucky that I have medication to help with my quality of sleep now, but I remember how it felt when I went almost 10 years without a single good night’s sleep. I think I cried with relief the next morning after I started taking the medication. I still feel fatigued all the time, but at least there is a noticeable difference in how I feel when I wake up versus how I felt before I went to bed. It used to feel like I hadn’t slept at all.
And maybe those who got the short end of the stick on the severity scale do begrudge those who can still fake some semblance of normality the way I begrudge people when they say, “Oh yeah, I get so tired all the time, too!” It’s cloying. I know it’s not malicious, though, so I get over it and don’t attack the character of the person making the comment.
But it’s not fair to judge people unworthy of identifying with “your” illness simply because their experience isn’t as bad as yours. This isn’t a competition. Acknowledging someone else’s illness in no way diminishes your own. You don’t have to tear someone else apart because they happen to have it a little “easier” than you. You probably know as well as they do, anyways, that the disease can progress at any time. So why be horrible to a person now when they may be just as disabled as you are, given enough time? Since apparently that matters.
We all deal with enough crap in our lives, chronic illness or not. Don’t play the “sicker than thou” card with me. I’m sick of it.
Tags: CFS, chronic illness, respect