Monday, April 14, 2014

Well That's Just Crazy!

I'm really excited to be participating in the WEGO Health Health Activist Writer's Month Challenge.  I'm hoping that the challenge factor will motivate me to write more often (every day this month, in fact!), and that that will develop into a habit of writing regularly after the month is over.  More importantly, I'm hoping that by sharing my experiences, thoughts, and insights about living with chronic and invisible illnesses, I'll be able to bring comfort to someone struggling with the same issues.

*Note - I'll be including this introductory paragraph at the beginning of every post, so that anyone who's checking in will have that background info.  If you come back another day (and I hope you do), you can skip this part!

Today's assignment: Well that's just crazy!  What’s the most ridiculous thing you've heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?

As we go through the struggles of trying to get a diagnosis and treatment, it's understandable that friends and family members of people with autoimmune/invisible illnesses may not quite "get" what we're going through.  After all, we barely get it ourselves - the symptoms are inconsistent, the labs are often normal, and we don't look sick.  We look to our doctors as the experts, the ones who will be able to solve this puzzle and help us feel better ... but sometimes they do just the opposite.
Image © Lee Roberts 2004-2006

The doctors also see themselves as the experts, sometimes to a blinding degree.  Their egos often get the best of them, and they believe that they know everything.  The problem arises, then, when they see something they don't "know."  Rather than admit - to themselves or to us - that they don't understand what is going on, they dismiss it ... they dismiss us.

That is exactly what happened to me, many times over.  The most ridiculous thing I've heard about my condition was the dismissal of all of my symptoms with a wave of the hand and a simple "maybe you're just depressed."  I knew that that was not the case: sure, I was upset about being in constant pain (wouldn't you be?), but I did not exhibit the other common symptoms of clinical depression: I had not lost interest in activities that I enjoyed, I did not have feelings of worthlessness or guilt, I did not have impaired concentration, I did not have recurring thoughts of suicide.  I was (and still am) a generally happy, bubbly, confident, optimistic, cheerful person who was experiencing a number of physical symptoms and wanted to get better.

No, Dr. House, you don't.
The frustrating thing about it was that the doctors didn't really listen to me, or ask the questions that would show them that this was not the case.  Some ran a few tests, and jumped to conclusions when the results were negative.  Others prescribed medication for a symptom, and jumped to conclusions when the medication didn't work.  Worst of all were the doctors who didn't try at all: they saw me come in with a binder full of medical records or heard my tale of other doctors I'd visited, and immediately declared that there was nothing physically wrong with me.

The problems resulting from this dismissal are manifold.  First and most obvious, when we don't get an accurate diagnosis, we don't get treated, and we don't get any better.  Not only do we not get better, but we are destined to get worse.  All research shows that early and aggressive treatment is the best way to slow the progression of autoimmune arthritis.  Without treatment, additional complications of the disease can include ruptured tendons, destroyed ligaments, damaged cartilage and eroded bone.

Another hurtful consequence of being dismissed as depressed can come from friends, family, and coworkers.  Those who care will often ask, "How did it go?  What did the doctor say?" and they, too, are ready to believe whatever the doctor says.  Aside from being incorrect, the label of depression brings with it its own stigma.  Those closest to us are more likely to believe our claims that the doctor is wrong, but that faith can only go so far when doctor after doctor offers the same dismissal.  Colleagues and acquaintances may come to believe that we are "merely" depressed and in denial, which can add serious complications to employment and relationships.

If this goes on long enough, it can even make us question ourselves.  We know our pain is real, but if our doctors, friends, coworkers, and family don't believe us, then maybe they're all right.  Maybe it really is all in our heads.  Maybe we're just losing it.  This can lead us to withdraw - from activities, from relationships.  We don't want to impose on anyone, and we don't want to be surrounded by people who doubt us.  Ironically, this withdrawal might confirm for some that we truly are depressed ... and can lead to greater depression (the feeling, if not the clinical diagnosis).

As difficult as it may be, we've got to hold on.  Hold on to the belief that we know our bodies, and we know when something is wrong.  Hold on to the faith that someday we will find the right doctor who will keep looking until s/he figures it out, and then keep working until s/he helps us find a way to manage it.  Hold on to the relationships that matter: the people who will believe in us despite the "expert" misdiagnosis.  Most of all, hold on to hope ... things can always get better if we hold on to hope.

**If you like what you read, tell a friend.  In fact, tell me, too - post a comment below!  If you don't ... well ... I'm all for honesty, but ... please be gentle!