Fibro: Living with disease and the sceptics

When I read a blog post (Fibromyalgia Negative Press) —  citing a newspaper columnist’s remark about people with Fibro who want to collect a government check and pop pills  (Random Nonsense ) —   I thought:  I’m glad I live with multiple sclerosis!

After several weeks of deep pain and fatigue, I’m actually grateful to live with a disease that people believe exists.  I mean, I could have fibromyalgia or CFS!   Not only would I have these miserable symptoms but people would doubt me.  Worse they might label me lazy or crazy.

When I told my neurologist about the recent “flare” in symptoms,  she suggested an MRI to see if there might be new MS activity. Because it’s MS and there are tests that show disease,  I can be confident that my healthcare providers all agree on this point.

But my client withfFibromyalgia, who is a senior executive,  finds that although her rheumatology doctor fully supports her, her other physicians seem sceptical about the diagnosis.  And she never mentions it to her colleagues because of the odd reactions she’s gotten.

I’m tired of the demeaning remarks about people with Fibromyalgia.  The common thinking is that this isn’t a ‘real illness’.  I’ve heard all kinds of people say that fibromyalgia people are depressed, difficult, even a little crazy.  I’ve heard healthcare professionals say that Fibro patients are their toughest. Others say that there’s a “Fibro” type who doesn’t seem to want to help her/him self.

What’s up with this?  Maybe it’s a chicken and egg thing.  If you haven’t lived with invisible, unpredictable and waxing & waning chronic illness  -pain, fatigue, mental issues – you don’t know how crazy making it can make even the sanest person.

When I’m not well, I’m not the same person that I am when I am well (just ask my husband, my kids, the people who work for me!).  When I have symptoms that don’t improve quickly,  I can lose hope and feel depressed.  When I see a doctor who tells me that I’m difficult to treat because I don’t get better quickly, I want to scream.  I know I become a more irritable and difficult patient.

I imagine I’m better able to manage my responses better than most, due to my training and what I do for a living.  But my symptoms derive from ‘recognized’ diseases with objective findings.   It would be that much more difficult to confront a world that doesn’t believe my symptoms are “real”.

As it happens, for some completely inexplicable reason (certainly not due to a change in wet weather), I woke up two days ago feeling much better.  The back pain is still there but improving and the fatigue and heaviness are gone.  I’m grateful both to feel better and to know that no one doubted that my symptoms were due to some underlying disease state.  At least, not that they said 🙂

What do you do when you face the sceptic? Have you experienced people at work who think you’re trying to get  out of work by “faking” it or making a big deal out of nothing?  Or who don’t even believe that what you’re living with is “real”?  Share it.