I often think about how many “lines” there are between “classes” of people with chronic illness(es). Even with the same illness, one can be more or less “healthy” and live a completely functional life and one can be terribly ill and die. I have seen it time and again with Behcet’s and often the people who have seen the worst of it and who have come back from the worst of it tend to “hide” behind an “overly compassionate” facade. By this, I mean that I have seen many people who have seen the worst of this “disease” and who have come BACK from that precipice and who have used that position to make themselves feel somehow “superior” to others. I suppose it’s a form of projection and I suppose you could call me calling these people out another form of projection, but that is not really the point I want to make here.
There are different “levels” of illness, even among those facing the same chronic illness, and even within the same individual at different points in his or her lifetime. I know this; I have lived this – perhaps not to the extent that others have (I haven’t seen it “through” yet; that is, I haven’t gone into “remission” yet – I’m praying I’m close, but I’m not yet “out of the woods”). It is very difficult to just group “chronic illness(es)” as “chronic illness(es)” because they CAN be so very different, even within the same individual or very similar individuals. Even among people who have similar “levels” of severity in their illness might face very different scenarios in their lives depending on their treatment, speed of treatment, aggressiveness of treatment, &c. One of these lines, at least that I can speak to and of, is the utilization of steroids at very high doses over long periods of time … and subsequently having to come OFF of those meds.
I have been through various withdrawals due to taking various meds for this “disease,” but steroid withdrawal, hands down, is the worst thing I can imagine. It screws with your entire body (literally – look into it please before you EVER let a doctor put you on these meds; I have now sworn that I will NEVER take these meds again once I am off of them unless my life or major organs is / are at legitimate risk); it screws with your mind more than I could ever attempt to articulate. Steroids really are “the devil’s Tic Tacs.” Talking about the side effects of this type of utilization of steroids and talking about withdrawal merit their own postS. I just want to say that there is a major “line of division” between those who have had to take these meds and taper off these kinds of drugs (and who have had to face their often life-altering side effects, like my osteoporosis) and those who haven’t. And that, in and of itself, is very much like trying to describe chronic illness to someone who doesn’t have a chronic illness.
I am trying very hard to reconcile these various “lines of division” within the various chronic illnesses and within myself. It is very difficult to be compassionate but not OVERLY compassionate – and I do believe that is a mistake made by many of those with chronic illness who have faced the worst and come back from it. I think it is a form of denial, in many ways – something I will have to explicate in other posts – because it allows the “survivor” to feel as if his or her struggles are meaningful in light of the suffering of others (that is, opposed to being inherently meaningful – trying to “unearth” the “inherent” meaning of one’s own chronic illness is, necessarily, very difficult mental and “spiritual” work). There is a line at which one really must draw THE proverbial “line in the sand;” that is, where there is suffering and legitimate chronic illness, and where there are people who just want the acknowledgment (I know that sounds harsh, but I have seen so many crazy people trying to be sick … I don’t know if I will ever understand it. This is a nasty disease and I “know” of far too many people who have died from it and suffered terribly because of it; when Dr. Y says something to the effect of “the drugs are benign compared with what the disease can do,” it is not a statement to take lightly….); there MUST be some way we can help those who need the support and compassion without dragging in all of the people who find doctors who “verify” their very iffy diagnoses. It is the many people who seemingly want a diagnosis to explain some pimples and joint pain if it drags on for a few months. I cannot explain these people, I cannot understand them; and I lack a way to be “tactful” in not being able to tolerate these people without invoking the immense suffering of others.
At any rate, I just wanted to point all of that out – that there are these “lines” both that are inherent and those that we must draw for ourselves and for others. These are not easy things to do and I still have not yet found a way to be able to “deal” with these people who seemingly “want” to be sick – even in light of my own struggles not only with this chronic illness (and chronic illnessES) but with the “treatments” and their side effects. It is a very difficult place to stand when one talks about chronic illness at all. It is something I will have to think more about and come back to at some point, somehow. I hope there is SOME kind of answer because it is not apparent to me. And I genuinely feel as if we are doing those who are suffering the most a terrible disservice by even acknowledging those who do not even fit the diagnostic criteria of any given disease or “syndrome.”
I do hope you are all having a happy and healthy Friday or weekend, wherever you are in the world. I hope some of that was coherent! I hope to be back soon soon soon – I always have more and more to talk about!
❤ Always, Beth