Friday Frustrations – Facing Symptoms During the Beginning of Remission / Minor “Cases”

Today I would like to “vent” about something that has been a continual source of frustration for me for the past few years, namely, the combination of “minor” complaints from people who suffer from moderate-to-severe chronic illness (and are in the state preceding remission) and those that come from people who have such minor illness that their “diagnosis” would likely be questioned by experts in the appropriate fields of specialty. I would like to begin this discussion with the caveat that I do not, in any way, mean to “belittle” or minimize the symptoms or illness from which anyone suffers. I am not in any position to play jury, judge, and executioner in any regard, especially when it comes to something as highly subjective as the experience of chronic illness.

With that said, I would like to clarify my “frustrations” regarding the “complaint” of symptoms from people who have looked death squarely in the eye and have been fortunate enough to come back from doing so as well as people who have no idea what severe chronic illness really feels like or entails. My personal complaint is not so much in response to the postulation of bothersome symptoms; rather, it is in my assumption that the people who CAN articulate these “complaints” are becoming, by and large, the primary “voice” of illnesses such as Behçet’s – a disease which CAN present in a minor way, but is also a disease that has something around a 10% fatality rate without certain treatments (I will try to hunt down the statistics I’m citing from memory here and put it here so you can see what I’m talking about!). The problem here is myriad in nature – one major necessarily “complication” of the compilation of these “minor complaints” is that the public, which is otherwise uneducated about these sorts of illnesses, associates things like having an ulcer here and there and some minor joint swelling as definitive and synonymous with the illness – a fallacy, at best, considering I know of far too many people (especially young women) who we have lost to this insidious illness. When the public begins to see a disease as malevolent as Behçet’s as something that presents with purely “irksome” symptoms, those who face the worst of this illness are more or less lost. People begin not to realize the fact that this illness can present in any number of ways (there are three “primary” confluences of symptoms – I will discuss this, as well as the “definition” and “diagnosis” of Behçet’s as a “Syndrome” in a later post), being an auto-inflammatory vasculitis that can affect the blood vessels anywhere in the body – and the entire body is comprised of blood vessels of various sizes (this “feature” of Behçet’s, namely that it affects blood vessels of all sizes, actually differentiates the “syndrome” from other types of vasculitis such as Wegener’s Granulomatosis, &c.). Behçet’s can present as “Neuro-Behçet’s,” a form of the illness that affects the CNS severely; it can present very severely in the gastrointestinal tract (I have suffered from this intermittently in the form of GI ulceration and bleeding); it can affect any organ system; at its “worst,” Behçet’s rears its ugly head through cardiopulmonary affectation. This is not a benign illness, and even the least stringent criteria for diagnosing Behçet’s insinuate(s) this fact: I have cited the ABDA (American Behçet’s Disease Association) for the International Clinical Criteria for Behçet’s Disease (this is the direct link to this page – https://www.behcets.com/basics-of-behcets/diagnosis/ ):

International Clinical Criteria for Behcet’s Disease

An international group of physicians has established a set of guidelines to aid in the classification of Behcet’s patients. The International Clinical Criteria for Behcet’s Disease classification states patients must present with:

• Recurrent oral ulcerations (apthous or herpetiform) at least three times in one year.
• Additionally, patients must present any two of the following:
  • Recurrent genital ulcerations
  • Eye lesions (uveitis or retinal vasculitis) observed by an opthalmologist
  • Skin lesions (erythema nodosum, pseudofolliculitis, papulopustular lesions, acneiform nodules) found in adult patients not being treated with corticosteroids
  • Positive “pathergy test” read by a physician within 24-48 hours of testing

What I find troublesome in many posts (often the “majority” of posts) on Behçet’s Support Groups / Informational Groups throughout the Internet is the presentation of individuals who have been given the diagnosis of “Behçet’s” but who do NOT meet the above criteria for actually being formally diagnosed with this illness. For instance, I have read many examples of individuals complaining of having mouth ulcers and joint pain; mouth ulcers and a skin lesion; skin lesions and joint pain, &c. &c. None of these “clusters” of symptoms would constitute a “formal” Behçet’s diagnosis. A doctor COULD have the “hunch” that a person presenting in such ways MIGHT have Behçet’s, but it is irresponsible not to utilize this set of criteria or other sets of criteria (for example, the Japanese criteria – this illness is more common in the Middle and Far East). Furthermore, this does not even take any labs into account; no genetic background is mentioned, &c. (again, I will discuss this at greater length in posts to come, I promise!).

A second “problem” I have with such “sloppy” diagnosis is that the people who are presenting with things like the aforementioned “clusters of symptoms” are likely being misdiagnosed – something that is bad both for those who genuinely suffer from Behçet’s as well as for these people. Although the treatments for Behçet’s and many autoimmune diseases often overlap, the dosages of certain medications and the utilization of certain more specific medications are used depending on the disease – for instance, the utilization of colchicine for a patient with Behçet’s and a patient with Lupus would be based on completely different clinical presentations. *I WANT TO ADD HERE THAT I AM NOT A MEDICAL SPECIALIST – ALL INFORMATION THAT I PRESENT HERE IS THE CULMINATION OF INFORMATION I HAVE GATHERED FROM YEARS AND YEARS OF RESEARCH. I VERY MUCH HOPE ONE DAY TO GET MY MEDICAL LICENSE, BUT AS OF NOW, I AM *JUST* A PATIENT SUFFERING FROM BEHÇET’S “SYNDROME” AND OTHER “AILMENTS.* A Behçet’s diagnosis can be an extremely tricky one to render; an incredibly broad spectrum of illnesses can present in many of the ways Behçet’s can, ranging from Ankylosing Spondylitis to various viruses to various very severe “true” autoimmune diseases. Diagnosing patients with Behçet’s with disregard to the diagnostic criteria utilized for diagnostic purposes is irresponsible on the part of the physician doing so – it very much HARMS the patient being “treated.” Dr. Yazici, one of the foremost researchers and physicians of Behçet’s in the world (along with his father, a pioneer in this field), has said that compared with Behçet’s, the drugs used to treat it are benign. This is an incredibly “telling” statement. If you can consider drugs like chemotherapeutic agents, thalidomide, and even high-dose prednisone (or steroid injections into the eyes, for example) “benign,” the disease these medications are being used to treat must necessarily be pretty awful. I can attest to this firsthand – and I have not even seen the worst of what this illness can do and DOES do.

One final “problem” I have found myself trying to contend with in this “misdiagnosis” of severe diseases on a large scale is that people who HAVE seen how severe this disease can be start to enter periods of remission. This is not the problem, obviously; the problem is that it seems that many of these people don’t take the remission as the “gift” it is, but rather come up with “new” lists of symptoms about which to complain. Rather than being upset by the dozens of necrotic ulcerations on their skin (I have seen awful things – if you are interested in the various manifestations of Behçet’s to which I am referring here, please just do a basic Goggle image search – you will easily see what I am talking about!) and being hospitalized for months and months because of secondary infection related to open skin wounds, these people, on the verge of remission, start to complain about minor sides effects of medications or about symptoms that could be caused by just about anything. I have read accounts of these sorts of people now complaining about things like feeling “foggy in the head,” feeling dizzy, having a pimple or two on their faces. I simply cannot wrap my head around this one – if I think about it, I experience these things all the time … it is just a matter of realizing these things are there but are completely overshadowed by the more serious manifestations of the illness or illnesses at play. I might be dizzy because of allergies; I might be using a different fabric softener which is causing my skin to break out; I might not be drinking enough water to allow my brain to function as well as it can function. These are such minor “symptoms” to me; when I look back even just at the number of times I have nearly lost my vision entirely, I cannot seem to find room to complain about something like the aches I might be getting in some of my muscles or the fact that I forgot to use one of my nasal sprays today. I suppose this is the heart of my “frustrations” this Friday; to me, you get down on your knees and thank GOD you are not facing blindness or the loss of limbs or the very real possibility of having a blood clot, &c. You THANK GOD you are not on hundreds of milligrams of IV steroids and you thank GOD that you have been able to come off the chemo drugs. I just cannot imagine a world in which I somehow need to define myself BY the symptoms of my illness, however minor those symptoms might be. It is a sad reality, if I think about it in that way; I do hope the people who utilize this “victimization” approach somehow find a way out of that darkness – you can unquestionably help others more by shining a light on their very painful path, by showing them there IS hope and REMISSION IS POSSIBLE than you can by continuing to complain about minor symptoms and side effects.

That was a long one, I realize. I just wanted to add here as well that I HAVE NOT GONE BACK AND PROOFREAD ANY OF THESE POSTS – this is something I am planning on sitting down and doing once I am settled in somewhere (I have been traveling back and forth between “living quarters” with this move and the medical issues I have been facing DURING the move!) – so I do apologize if there are large chunks of text that are incoherent or “more” ramble-y than “usual.” Please bear with me as I try to get this “blog” up and running for real! Thank you for taking the time to read this, as always! If there is ever a topic you would like me to discuss here or you would like to discuss with me, please do not hesitate to contact me! You can always email me at thespooniesensei@gmail.com – even if you just need someone to listen to what you are going through or you just need to vent. I am here for you to let you know YOU ARE NOT ALONE! I hope you are all having a happy and healthy day wherever you are in the world and I will be back here, writing away, very soon!

❤ Always, Beth