THE PROBLEM Defining “Chronic Illness”

Throughout all of these posts and all of my “posts” on “Social Media” (and the posts of others with chronic illnesses for that matter!) I have realized there is a certain “dilemma” that faces everyone who “suffers” from a chronic illness (or chronic illnesses) – namely, that the term “chronic illness” doesn’t really carry with it any information regarding the illness or the severity of that illness. The same could be said if I (or you) were to name the illness with which we have been diagnosed – if I say “I have Behçet’s ‘Disease,'” or “I have (seronegative) Rheumatoid Arthritis,” people might UNDERSTAND that I suffer from a condition and perhaps might even know what that particular condition entails, but saying “I have a chronic illness” or even NAMING that illness – even if it is an illness that is known to be horrible – doesn’t have any “weight” as to the severity of the “affliction.” If one says he or she has Lupus (she or he?), anyone who is reasonably informed about very basic “medicine” will know that’s not a diagnosis anyone really wants to have; however, like many of these “chronic illnesses,” saying that one has Lupus doesn’t tell the other person (or people) in the “conversation” how severe the case is or how severe the case might be at the time (those of us with chronic illness(es) know very well that these diseases can be HORRIBLE one day and almost non-existent within a few weeks or months). This can be very problematic for a long list of reasons – people might have heard of the disease, but inevitably the people they have encountered who HAVE said disease are either well enough to be heard by the “masses” or well enough to be out and about and “functioning” more or less “normally” in society. If this were not the case, no one would have heard of these kinds of diseases, unless, of course, they happen to be medical professionals or vividly remember episodes of shows like “House.” Hell, even “House” portrays Behçet’s to be something of a “minor affliction.” I forget the episode and season, but Dr. Chase is being “sued” for not correctly diagnosing a woman who I believe bled internally when he diagnosed her with Behçet’s – SOMEONE WITH BEHÇET’S COULDN’T POSSIBLY HAVE INTERNAL BLEEDING! *WRONG!* I am not sure if I have mentioned it here, but I have been hospitalized on at least half a dozen occasions FOR EXACTLY THIS PROBLEM – in the West, gastrointestinal involvement is actually very common with this “disease.” It is not just a disease of “mouth ulcers and joint pains” as I have discussed in earlier posts; this disease DOES have something around a 10% fatality rate when azathioprine is not used (and the rate for being unable to METABOLIZE azathioprine is remarkably high – that is a discussion in and of itself!) – the odds of going blind once the disease has gone systemic are even higher (if memory serves, somewhere in the 20-25% range … and that is like, total blindness, not just some damage to your eyes – I think all of us who have had ocular involvement have some degenerative changes to our eyes … I know I do!). At any rate, what I am driving at is that disease that are very rare (in certain countries or in general) tend to be diseases that are “hunted for” by physicians …. I cannot tell you how many times I have been either at a routine appointment or hospitalized and suddenly there are a dozen doctors or doctors and medical students, &c., in the room because “THERE IS A PATIENT HERE WITH BEHÇET’S!” They know they are likely never to see another one of us again. AND THEREIN LIES THE PROBLEM!

I think what tends to happen is that physicians who are not particularly well known for their expertise in a given field tend to “overdiagnose” “fad” diseases. I think Behçet’s is a “fad disease” right now – the number of people I have seen who have been supposedly “formally diagnosed” who do not even meet the very minimal diagnostic criteria blows my mind. There are also certain areas (at least in the US) that I have found “correlate” with the incidence of Behçet’s – I don’t want to “call anyone out,” so-to-speak, but I will just say that there is NO correlation between this incidence and population or between this incidence and ethnic heritage, &c. – factors that one would expect to affect something like the rate of diagnosis for a rare disease like Behçet’s. I know I have discussed the implications of this at length here before, but today I just want to note how even if every person who has been mistakenly diagnosed actually HAS the “disease,” that there is an inherent problem just in the definition of “chronic illness” or even the more specific disease diagnoses themselves.

I can illustrate this just by using myself as an example. When I was a teenager and the disease first struck “hardish,” I was affected largely with frequent recurring fevers and long periods of malaise and fatigue – I would be “ill” for months at a time and no one could really figure out what was wrong with me. I had experienced oral ulcers my entire life – but so did my mother and other members in my family, so I never really thought that was indicative of anything to be perfectly honest. Even to this day, the ulcers, when they come in the dozens, are more of a “nuisance” than anything else – I have learned to deal with them with lidocaine or “magic mouthwash” or whatever other numbing agent seems to work at the time. Around the age of 14, I began having nerve involvement – this was thought to be the result of the “Chicken Pox” vaccine somehow affecting my nerves (it is not impossible; my sister, who received the vaccination at the same time developed shingles from the vaccine – this was many, MANY years ago and I really do not know how much the vaccination has changed – let me just say that despite having bad reactions to SOME vaccines, I am A FERVENT ADVOCATE OF VACCINATIONS – it is inevitable that some vaccinations will not “jive” with some individuals but it is an absolute INDUCTIVE FALLACY to believe quite mistakenly that vaccinations as they stand today are the cause of health “issues” like the “increase” in autism, &c. – until I see definitive proof to the contrary, I, a child who was severely immunocompromised CONGENITALLY, believe that RESPONSIBLE parents vaccinate their children, if only for the welfare of those of us who have very weak or perhaps “no” immune systems and cannot fight off legitimately scary diseases like measles, &c.). That long aside aside, I also started to develop genital ulcers – I was actually treated with Valtrex for a long time without EVER being given a Herpes test (imagine how traumatic that is for a teenage girl who has never had sexual relations with anyone … it was devastating to say the least). Finally, when I was JUST 17, the genital ulcers had gotten so bad and so numerous that I couldn’t go to the bathroom (my apologies if that’s TMI for those of you out there who are “trigger sensitive!”) and my physician arranged for me to be hospitalized in a larger area – this hospitalization ended up being the one that eventually saw my “formal” diagnosis. I suffered with very severe symptoms intermittently (the aforementioned fevers, illness, ulcers, skin lesions, nerve problems, and joint pain in my small joints) for a number of years.

That is where this story changes. When I was in my early 20s, the disease went “systemic;” that is, it started to affect my eyes (with Behçet’s, the “criterion” for calling the disease “systemic” usually hinges on ocular involvement). The joint and bone pain and swelling also intensified to the point where I would black out from the pain despite being on the equivalent of a GRAM of morphine EVERY DAY. I was often confined to a wheelchair. I also started having other CNS involvement including meningitis and encephalitis (as well as optic nerve involvement, which kind of rides the boundary between eye and CNS); the severe gastrointestinal problems began; my body started “rejecting” foreign objects like earrings and stitches. This was a completely different disease than the one I had experienced as a teenager although it was the same disease causing these various problems. As a side note, I am HLA-B51 positive; HLA-B51 has been associated with the development of Behçet’s, especially in the Middle East – patients with HLA-B51 tend to have a “more serious” form of the illness (not always but often) and the disease OFTEN hits very severely when one is in that 20’s-30’s age range. I was a textbook case. My mother arranged for me to see Dr. Yazici, the “best” physician in this country for this disease (his father is THE leading physician for Behçet’s in the world). Despite having the “classic symptoms” of Behçet’s INCLUDING BEING HLA-B51+ and INCLUDING HAVING A POSITIVE PATHERGY TEST, Dr. Yazici was not at all convinced that I had the illness until he watched as my finger joints started to swell in the heated basement that was, at that time, his office. When I think of all of that I just have to shake my head at the many people who are being diagnosed when presenting only with mouth ulcers and some joint discomfort. Dr. Yazici is not seeing “new patients” any longer, sadly. However, it is just interesting to think about how I had been through so much of the disease and what it DOES and CAN DO and yet my diagnosis was questioned (this was a time when Behçet’s was NOT a “fad disease,” no one had heard of it; the diagnosis was incredibly difficult to come by, &c.) and now there are hundreds of people being diagnosed who do not even meet the basic diagnostic criteria.

At any rate, what I am ultimately getting at is that there is a MASSIVE DIFFERENCE between the Behçet’s I had as a child and as a teenager, as severe as the SYMPTOMS had been, and between the Behçet’s I experienced as a “young adult” up until very recently. The “systemic” involvement component is crucial in differentiating the “kinds” of severity in terms of symptoms, but I’m not quite sure that could be applied universally – there are some people I know who have had very severe eye involvement and very little involvement other than mouth, genital, and skin ulcerations and other more “minor” involvements that have since passed. I am sure this is true for many diseases as well. Basically there is A DIFFERENCE BETWEEN the illness I had when I was younger and that same illness I had when I was a little bit older, despite both being severe enough to make me “non-functional.” I suppose I am different from many of these more “recent patients” in that as well – when I was younger, I would be so sick that I would not be able to leave the house – often I would not be able to leave the sofa – for weeks and months. There is a MASSIVE DIFFERENCE between a “chronic illness” that completely impairs your ability to “function” as a “normal” human being and a “chronic illness” that is more or less irritating. To me, mouth ulcers tend to be “irritating.” I know they can be very severe – I have HAD very severe mouth ulcers. But for someone who isn’t forced to speak or whose living relies on speech or vocal capacity in some way, mouth ulcers in and of themselves are NOT completely disruptive to one’s capacity to FUNCTION. When I say “function” I mean take after oneself on a basic level (basic hygiene like brushing your teeth and hair, walking, eating, &c.) and go out and interact with others. That is generally where I PERSONALLY draw the “line” between what I consider “severe disease” and “not-so-severe disease.” If one can say with veracity “I CONTROL THIS DISEASE, THIS DISEASE DOES NOT CONTROL ME!” I tend to think this person has not seen the way THIS (and other!) disease(s) absolutely RAVAGES your life. If you can do all of the things you did when you were “well” with perhaps minor adaptation, it is not, in my opinon, “severe.” Someone who is very ill cannot continue to go to school and out with friends or lift weights at the gym or take a long run. Like … those things aren’t really even on your mind when you first get so sick (after several years … well, that’s a different story) – YOU ARE TOO SICK EVEN TO THINK ABOUT WHAT YOU ARE MISSING. You struggle to eat, to sleep, to bathe, to use the bathroom if you are not vomiting blood or passing out from pain or stuck in a wheelchair because you cannot walk. THIS is severe disease. And with that, I will try to wrap up this long rant!

Basically, all I am trying to say is that somehow the “chronic illness” community needs to come up with a way to differentiate between those of us who have “severe” illness and those who are just inconvenienced by their symptoms. They are both called “chronic illness,” but they are not the same. Even within one lifetime, one can go from having that incapacitating chronic illness to having functional chronic illness – I am hoping I am there and getting there more and more every day (it is, at any rate, a terrifying and arduous process in every sense of the word “arduous”). I say this because those “healthy, normal” people outside the medical field do not know better than to associate whatever disease with those who are “diagnosed” with that disease but WHO ARE WELL ENOUGH TO BE TALKING ABOUT IT THAT WIDELY. I really hope to become something of a LOUD voice in this regard; I have been to the depths of HELL with this illness and I have very literally faced death more times than I can count. I am not at all belittling or discrediting the symptoms of those who are affected in any way by any chronic illness; I am just saying that it is not good for those of us who are suffering in a much more serious way to be thought of as somehow “less than” for not being able to just “grin and bear it,” so-to-speak. These are not things we can just “smile and force through” I promise. If you are like me, you will collapse (literally) trying. Or you will start to bleed out and have to be taken via ambulance to the hospital. &c. &c. &c. But there is a difference between those kinds of “chronic illness” and the kinds in which people CAN still run 5 miles a day (perhaps with the assistance of a brace or something) or who CAN still brush his own hair, &c. We just need to establish a way of communicating that there are people who have very serious illnesses that ARE NOT CANCER (I say this because people hear the word “cancer” and immediately they think severity) but who cannot function like others do. We cannot go out and date and make friends when we are that sick. It’s a simple impossibility. And it does no good for those people who are so sick to be thought of as somehow “weaker” than those who have minor symptoms and CAN physically “push through” the pain without throwing clots or bleeding out or going blind, &c. It is no good for the research for these disease because such research is based on FUNDING and funding comes from the HONEST AWARENESS OF THE SEVERITY OF A CONDITION. I often utilize breast cancer as an example here – I believe with all of my heart that the reason non-metastatic breast cancer has a survival rate of 96%+ is BECAUSE SO MUCH ATTENTION WAS DIRECTED TOWARD FINDING A CURE AND ENGAGING IN BETTER RESEARCH – to this day we still see pink ribbons everywhere! I am by no means saying that is bad! I am just illustrating the point that if PEOPLE (“the masses”) UNDERSTAND HOW BAD A DISEASE IS (breast cancer is a good example hree as well because almost everyone knows someone who has had breast cancer), RESOURCES THAT CAN HELP THOSE WHO HAVE THAT DISEASE BECOME AVAILABLE, ENABLING RESEARCH, ENABLING PATIENTS TO GO INTO REMISSION AND LIVE PRODUCTIVE AND FUNCTIONAL LIVES! This just cannot happen if we do not figure out how to discern a “severe” case of a chronic illness with the “not-so-severe” cases. People see the minor cases out and functioning; and those of us who have severe cases just suffer in silence because we have to. If it takes those of us who have seen the worst to speak out, if it takes the people who have SEEN us at our worst to speak out, we need to do it and we NEED to do it as loudly as possible.

I hope that was at all coherent! I am suffering not only from a terribly stressful day and from steroid withdrawal and pain, &c., but from the quasi-regular TERRIBLE VISION that comes w/MY Behçet’s. I honestly cannot see what I am typing so I hope it is at the very least legible – this topic is INCREDIBLY important to me (and it is INCREDIBLY important to those who have it even worse – and I have met MANY of them, sadly). Thank you for taking the time to read this and I do very much hope you are having a happy and healthy day wherever you are in the world! I will be back soon soon soon!

❤ Always, Beth

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