Rant: How Not To Be Helpful

November 15, 2011 at 12:37 am (Living With Chronic Illness, Medical) (, , , )

So it’s late at night; not the best time for a well thought out blog entry. However, after several comments on my Facebook today from well-meaning people suggesting diagnoses and treatments, I feel like I need to put my feelings out there once and for all.

I understand that I’m medically interesting. Four years of various symptoms and different medical problems that don’t quite add up to one Big Diagnosis puzzles people. They feel compelled to help, but don’t really know or understand how to manifest their feelings in a positive and helpful manner. 98% of the people who read or hear about my medical problems are laymen; that is, they are not medical professionals and do not have any academic standing behind their conjecture. The only way they can relate to what they see here is to compare it to people they know or experiences that they personally have had.

So I get a lot of “my uncle had…” stories. More than I can count. Usually use these manifest when someone reads about one or two different symptoms, so the person gloms onto those symptoms and tries to force a diagnosis. Most of the time these people do not know the whole story, or know what doctors I’ve seen, or what diseases have already been ruled out. (Clue: it’s a big list) At this point, if you are a medical layman and you hear about some of what I’m going through and a diagnosis comes to mind; chances are very high I have already heard it. Chances are pretty good that it has already been explored by the medical professionals in my life.

I’ve listed these before, but I feel like this rant would be incomplete without them. So far, I have seen: four neurologists, a rheumatologist, a pulmonologist, a sleep study specialist, a cardiologist, two primary care physicians, two infectious disease doctors, one pain management specialist, two OB/GYN’s, an endocrinologist, two massage therapists, one chiropractor, one acupuncturist, two shamanic healers,one hematologist/oncologist, one gastroenterologist, a bariatric surgeon, a general surgeon, and probably other doctors that I can’t think of off the top of my head. Let’s call this the most comprehensive list I have made public so far. I post this list not to brag, but to illustrate that I have had quite a bit ofย  professionals take a whack at what is causing all of my symptoms (or in the case of some of the specialists, some of my symptoms). If they haven’t thought of it, chances are someone with no medical training isn’t going to think of it either.

I highly resent the idea that if I am not open to random suggestions for medical laymen, that somehow I am not taking my health care seriously. I believe I have the right to draw boundaries around random Internet interactions (and even in person interactions) when it comes to discussing my health situation. I understand that by making a lot of my health journey public, and by titling my blog Dying for a Diagnosis, that one might infer that I would welcome such comments. The truth is, I’m literally sick of them. It only serves to further frustrate me and complicate the medical process.

I have an actual team of medical advocates, most of which have some medical training, who go to doctors appointments with me; they take notes, ask questions on my behalf, keep track of information from Dr. to Dr., and help facilitate intra-Dr. communications. They are allowed to suggest diagnoses. This is because they know the whole story, have heard what other doctors have said, know what diagnoses have already been suggested (and discarded), and understand that even though they’re on my side, I’m so sick and tired of suggestions that there is a very specific way to bring one up that doesn’t immediately trigger my gag reflex.

I want to be clear: I understand that these suggestions, from a place of love and concern for my general health. I understand that they spring from a feeling of wanting to help and not knowing what to do. I have a post that I’m still composing in my mind, called Strengths and Weaknesses, that will help clarify how people who feel compelled to help can do so in a way that is conducive toward making me happy and making my life a better place to be. I’m a little busy with some teaching stuff right now, but I promise that post is on its way.

I know that the Facebook thing is beyond repair, but I want to remind readers of my blog that comments that suggest diagnoses will be summarily deleted; and if you bug me about it, I will ban you from commenting on my journal. I think what I have learned from today’s situation, is that I am no longer going to post medical updates to Facebook.

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5 Comments

  1. Jay said,

    I spend VERY little time on Facebook these days, but I just brought it up and your post directing people to this blog post was right on top.

    I’m sorry you are still going through all of this!!! I haven’t seen you in a gazillion ions but I still think of you often. in fact, I discovered a rubber ducky recently in a box from an old job that someone put in there by accident and I immediately smiled and thought of you. I’d send him to you but he’s not unique enough to be one you don’t already have ten of him ๐Ÿ˜‰

    I was trying to think of something cute to say, but now I have Ernie and his rubber ducky in my head. In fact before I could finish typing that sentence I had to Google it. If you want to giggle like I three year old just like I did check out: http://youtu.be/Mh85R-S-dh8. Now I have to try to go get some sleep now… Better take an extra pill ๐Ÿ˜‰

    I wish you the best,

    Jay

    p.s. LOVE the new profile pic on Facebook, quite handsome!!!

  2. Bridget Jorden said,

    As someone who is also “medically interesting” you have my sympathies. I have an actual Dx, but no explanation as to why my symptoms are as severe as they are.

  3. Eric S said,

    Sheesh. Well, I am an absolute layman so I would think I should keep my mouth shut. I merely wish you better luck in finding what you need.

  4. Wintersong said,

    As someone who has sympathy and some common experience with you, here’s the thing that makes me crazy:

    There is an inverse relationship between how “medically interesting” medical professionals find my complex symptomology and how “medically interesting” laymen do. As you talked about in “Five Things…” the more hard to puzzle out medical conditions get the less active and engaged the doctors get and the more everyday people want to play House (Dr. that is).

    Every time someone presents me with a “solution” or you with a “diagnosis” that is nearly old enough to have its own Bar Mitzah, all I can think is “Gee, if only the medical professionals I’m paying to give a shit were half as invested/excited as you are. To bad the people who care don’t know shit and the people with the knowledge don’t care.” It only rubs the fact that the docs have basically given up on trying in my face.

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