People say a lot of stupid things, especially when they think they know more about something than they really do.
For some reason, a whole bunch of people with no special medical knowledge and very little experience with illness think they know what's going on in the bodies - and especially minds - of people with fibromyalgia, chronic fatigue syndrome, and the depression that often accompanies them.
Those people tend to say things like, "Can't you just snap out of it?" or "If you'd get out of the house more, you'd feel better."
Those people completely miss the fact that illness is not a choice. They regard fibromyalgia and chronic fatigue syndrome as if they're mental illness - which they're not - and don't understand that mental illness is no more a "choice" than physical illness. They honestly believe that millions of people just decide to be sick, or aren't strong enough to get over life's little hurdles.
I recently saw a cartoon titled "If Physical Diseases were Treated Like Mental Illness." It had people saying things like, "I get that you have food poisoning and all, but you at least have to make an effort," and "Have you tried ... you know ... not having the flu?" It makes a brilliant point about how mental illness is treated, but you and I know all too well that some physiological diseases are treated that way.
I know some of us hesitate to tell anyone if we are depressed because we're afraid all of our symptoms will be blamed on that. It's happened - in doctor's offices, workplaces, and courts of law. Someone will be labeled as "just depressed," and the mental-illness stigma kicks in. It's doubly bad, because:
- Depression can't explain everything we go through and we have clinical evidence showing fibromyalgia and chronic fatigue syndrome are distinctly different from major depressive disorder;
- If depression were our only diagnosis, it should still be treated as the serious, debilitating health issue it is and not written off as someone just needing to pull themselves out of it.
Even those of us who don't struggle with depression need to fight the stigma of mental-health disorders because we continue to be lumped in with them in spite of the current state of medical knowledge. We need to help spread the understanding that depression is a serious disorder with physiological components.
I recently came across a great quote from British actor/comedian Stephen Fry, who has talked a lot about his suicidal depression and the bipolar disorder it stems from: "If you know someone who's depressed, please resolve never to ask them why. Depression isn't a straightforward response to a bad situation; depression just is, like the weather."
So when people say we should "snap out of it," we should ask them to snap out of being tall, or brown eyed, or bipedal. Ask if they'd say the same thing to someone who had Parkinson's or HIV, both of which have elements in common with our illnesses. Don't let them get away with belittling behavior.
It's hard, I know, but you'd be surprised how easy it can be to make people see how little they understand the situation. Several years ago, my grandma was diagnosed with restless legs syndrome (RLS.) She was well into her 80s and had diabetic neuropathy (pain from nerve damage) in her feet. I knew it was a short logical step from nerve damage to RLS, so what my mother said just floored me - "She'd be fine if she just used her legs more during the day."
I came back with, "Really, it's that simple? A little more movement would correct her nerve problems, alter her neurotransmitter function, and fix everything right up? It's the answer millions of sleepless people have been waiting for! I can't believe no doctor ever thought of it." (She was abashed enough that I didn't go into how using her legs more, when that caused searing pain, wasn't a terribly viable treatment option anyway.)
Okay, so sarcasm isn't always appropriate, but I have more respectful ways of pointing out these things, too. Even then, I try to ask a lot of questions so they have to repeatedly admit their ignorance, like this:
Rude & ThoughtlessUninformed Person: Fibromyalgia's not a real disease, it's just what doctors say when they don't know what's wrong with you.
Me: Are you aware that it's classified as a neuro-endocrine-immune disorder because it involves so many major bodily systems?
Uninformed: Um, no.
Me: Did you know it involves dysregulation of at least five major neurotransmitters as well as structural changes to the brain?
Me: Did you know we have decades of research showing dozens of physiological abnormalities, and that doctors are supposed to follow very specific diagnostic criteria?
Uninformed: No, I didn't.
Me: It's a complex disorder that most people don't know much about. If you'd like to learn more, I can give you some links.
Uninformed: (Slinks away feeling far less confident than when making the original statement.)
It's hard to confront people about their ignorance. The stress of it, of course, can be a problem for us. However, when I let my fear keep me silent, I feel like a victim. When I say something, it spikes my blood sugar and leaves me shaky and achy, but I feel stronger and better overall.
It's not always worth saying something. You may have too much to lose in the situation. You may know that the person is never going to listen anyway. Sometimes it's better to walk away, then send the person an informative article later with a note saying that you hope it'll help them understand. You have to pick your battles and your approach, but I hope you'll take a minute to prepare some responses in your head so that you can help change people's opinions when you have the opportunity.
What horrible things have people said to you about your illness? What do you wish they knew? What have you said back to them? Leave your comments below!
- A Simple Explanation of Fibromyalgia
- A Simple Explanation of Chronic Fatigue Syndrome
- Things NOT to Say to Someone with FMS or ME/CFS
- More Resources for Friends & Family
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