Compassion or Codependency?

For the last year or two, I have noticed that there have been many questionable “Behçet’s cases” on the many “support groups” on Facebook and other social media platforms. When I utilize the word “questionable,” I am doing so basing my judgment on the standard criteria used to diagnose the “Syndrome” (more on that one later, I promise!) – a list of criteria that are, in my opinion, not definitive enough to rule out many other illnesses (which speaks even further to my point here!). For example, someone will write in posting a photo of two spots on their back, claiming it is some unfathomably painful skin problem that occurs intermittently along with something like joint pain. This case, as an example, does not even meet the aforementioned criteria for diagnosing Behçet’s.

My “issue” with all of this comes when there are VERY OBVIOUS Behçet’s patients who have very serious and legitimate concerns and questions to which there are rarely answers (all of the answers, it seems, are being given to the people with a few pimples or “fever blisters” in their mouths). I find this issue to be incredibly problematic for a number of reasons. First, there are apparently at least several doctors who are diagnosing a potentially fatal disease when the “conditions” of having that disease haven’t been met. Second, I do not understand why those who have seen the worst of the illness (including death – we have lost far too many people, especially young women, to this illness in the last several years – none of whom I have known personally, but who have been in the “Behçet’s Community”) and rather than trying to point these “questionable cases” in the right direction, serve only in doing the exact opposite by expressing some sort of “compassion” for these people – people who, for whatever reason, either do not understand the severity of this disease or people who, for whatever reason, want to be sick with a severe disease. Just handing out blind compassion might make you feel good about yourself (the whole idea of “there is no such thing as a selfless act”) but it does not serve the people to whom the compassion is being given nor does it serve those of us who are actually suffering with the severity of this illness. The most “reputable” doctor in this country (if you have Behçet’s, you likely know about whom I am speaking) has said time and again “the drugs for Behcet’s are benign compared with how severe the disease can be.” (I paraphrased that – but that is the basic idea he is conveying.) When you consider the drugs used to treat this disease are drugs like thalidomide, methotrexate, steroids of all kinds, biologics of all kinds, azathioprine, cyclosporine, &c. &c. &c., you should really understand the gravity of such a statement. In fact, the aforementioned doctor has frequently referenced a study done before the widespread use of azathioprine in which the mortality rate of Behçet’s was somewhere around 10%. That’s not a benign illness that presents with an occasional mouth lesion and some joint discomfort. If you do not “believe me” just on my word on this one, please just do a basic Google image search for “Behçet’s uveitis” or “Behçet’s skin lesions” or something to that effect. They are not pretty images, and the symptoms are absolute hell to live through. I have had Behçet’s skin lesions and I have had widespread acne and I can tell you the two feel and look nothing alike (at least in my case).

Furthermore, the research that is being done to find “better” treatments for this insidious illness are not at all helped when the “patient population” is not completely comprised of individuals who meet the diagnostic criteria for being diagnosed with Behçet’s. Smaller hospitals and less well known doctors do collect their own data – and when said hospitals and doctors are LOOKING for a zebra when they only have horses, the actual zebras are not at all helped – utilizing any definition of the word “helped.”

I could go on about this topic for a long time but I do not want to come off as lacking compassion because this is not at all the case. I realize Behçet’s can be non-systemic (i.e., “mild”) and present without eye or internal organ involvement. HOWEVER, even in these cases, in order for a patient to be LEGITIMATELY diagnosed with this “Syndrome,” he or she MUST, at the very least, meet the diagnostic criteria for Behçet’s. It is irresponsible on the part of the doctors for presenting this diagnosis to those who do not meet these criteria and it is irresponsible on the part of those who are supporting those who do not meet these criteria and yet continue to insist they have this illness. Trust me, even in mild cases, this is NOT a disease you “want” to have.

At any rate, I hope that wasn’t too much of a rant! This is just an issue I have been tackling on and off for quite some time now and one that bothers me frequently. I also feel that claiming a few bouts of acne and a swollen joint or two dishonors the many who have lost their battles with this illness (or lost their eyesight – the rate of blindness in other parts of the world and in those who are affected, especially HLA-B51 positive patients, still – at least to my knowledge – hovers around 20%). What I generally mean to get at with all of this is that there is a difference between showing compassion for someone (and perhaps presenting alternative diagnoses, asking about certain test results, asking the “affected” person to do some more research, &c.) and having an issue of NEEDING the verification of others to feel good about yourself. I have labeled this “NEED” codependency here, although I’m sure there are other words that could describe it more thoroughly (in the narcissistic / codependency “debate,” I do feel this is more of an issue of validation than anything else).

If you suffer from moderate or severe chronic illness (Behçet’s or another illness / disease!), have you run into this “problem?” How do you address those who present in these very “mild” ways (and ways that are not diagnostically significant) without coming off as rude or dismissive? I suppose the question really is “how do you compassionately address someone who doesn’t seem to have x illness without being overly supportive (to the point of disservice to all involved)?” It’s a tricky question, but one that needs answering!

As always, thank you very much for taking the time to read this. I hope you are having a happy and healthy day wherever you are in the world! Have a great one, everyone!