There's a little worm that nestles into the back of your brain when you're faced with a potential diagnosis of MS or other autoimmune disorder. The worm's name is:
HYPOCHONDRIA
When I saw my doc about a year ago and asked him to take a look at these seemingly unrelated symptoms, which I felt embarrassed to even share, I told him: "I'm hoping you'll come back with a diagnosis of Hypochondria."
chuckle chuckle... wink wink.. nudge nudge...
But he took me seriously, bless his heart. I'm not one who steps into the clinic more than once a year for my annual exams and, maybe, a flu shot. He knew that I was there because SOMETHING WAS WRONG that I couldn't put my finger on.
He'd had a recent encounter with that same experience himself, so I suppose that's part of the reason why he was so supportive and sensitive. After NOT BEING HIMSELF for a few months, he took matters into his own hands, found out he had cancer, ended up in brain surgery, and is now, almost 4 years later, back to himself. Probably an even better version of himself.
So he knows what it feels like to have random symptoms that, by themselves, don't seem to amount to anything. But when they cluster together and simple daily things like, heck, going to the bathroom, are suddenly not going the way they've been going your whole life, ya gotta wonder...
I found out recently that my husband thought I was a hypochondriac before my diagnosis. Maybe for a while now. Part of me was like: yep. Of course he did, I had all these bizarre things going on with no simple explanation. This is why, in fact, many of us MSers are so freakin' relieved when we get a diagnosis... it means we aren't hypochondriacs, it's not in our heads (though, well, yes, it is! LOL), and there's objective scientific data in multiple testing that show the presence of a real disease.
But part of me was hurt to know this, though I always sensed his skepticism. How could he think I was imagining this? It makes me wonder if he thinks I'm some sort of psycho wingnut. Seriously.
And part of me was grateful that, until now, he'd not said anything about this. Not out loud. That would have been awful.
So many of my MS peers are faced with accusations that they are hypochondriacs, not only from their spouses and children and parents and other loved ones, but from their employers, EVEN THEIR DOCTORS in the face of objective data showing otherwise.
No wonder people wait to get a diagnosis when the symptoms aren't alarmingly obvious like, say, a giant festering skin cancer or a heart attack.
I waited. Yep. I was having parasthesias sweeping across my legs about 12 years ago. I was also experiencing leg tremors at about the same time, and endless bouts of fatigue. I totally remember this and thinking, Oh crap, I must be getting Parkinson's or something. But I *didn't* go to the doctor because, guess what? In my mind, I'm also thinking, Parkinson's is an old person's disease. I'm still in my 30s. If I go to see the doctor, my family, my husband, my doctor will all THINK I'M A HYPOCHONDRIAC.
So I waited a dozen years, which probably just progressed my disease state without treatment, silently, until about a year ago. If I *had* gone in, I would have probably been diagnosed and treated.
But I didn't.
[WARNING: RANT ENCLOSED. You know what? This is not a problem for me, caused by me. This is a problem that comes from within our society. We need to stop being so mean and judgmental and dispassionate about each other. Yeah, Society. I'm lookin' at you. When y'all are out passing judgment on others for no good reason whatsoever, you contribute to this fear that keeps people from truly doing the right thing. Society, you want to do the right thing? Be compassionate, for crying out loud. And stop making people feel afraid to do the right thing! RANT OVER.]
It's not altogether useful to go into this IF ONLY practice (IF ONLY I had seen the doctor 12 years ago, as a for instance), because you can't move forward while living in the past and thinking about what you coulda-shoulda. That's not productive and can only make you angry or depressed. No point in going there. But if you or a loved one are putting off going to the doctor because of a range of unusual and seemingly unrelated symptoms because you are AFRAID TO BE DIAGNOSED AS A HYPOCHONDRIAC, you would be in good company.
Nobody thinks random jaw pain will lead to a potential heart attack, but this is, in fact, what happened to a loved one of mine who, thank goodness, went to the doctor anyway and ended up in the hospital with a triple bypass that likely saved his young life.
Let's face it, you would be grateful for any diagnosis wherein the outcome is LIVING. You can treat, heal from and cure hypochondria. MS? An acute heart attack? Notsomuch.
Here are some links to others' stories who've dealt with the fear of being labeled a hypochondriac. All of their stories resonate with me and point to a greater need for health literacy in our society as well as more self-empowerment and overall compassion. We can't win the fight against any disease if we let fear take the reins or if we don't acknowledge real disease in the first place.
3. "Hypochondriac": The Most Painful Word In Pre-Diagnosed Primary Immune and Other Rare Diseases
4. JUST FOR GRINS: It's really difficult to get an MS diagnosis for some people. Read This Story. My DX only took a few weeks and one team. But apparently my story is unusual; the women in the story at the link seems to have a story more akin to the reality of diagnosing MS. You're going to be appalled, just sayin'.
4. JUST FOR GRINS: It's really difficult to get an MS diagnosis for some people. Read This Story. My DX only took a few weeks and one team. But apparently my story is unusual; the women in the story at the link seems to have a story more akin to the reality of diagnosing MS. You're going to be appalled, just sayin'.
PS My husband doesn't know this blog exists. In case you were wondering.
