Are Well-Meaning Friends/Family Driving You Crazy?

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We’ve all been there – many of us deal with it every day . . . the well-meaning friend or family member who comes running every time there’s a new pill or treatment available for our chronic illness. We know they just want to “help” us get better, but it’s crazy-making to constantly be bombarded with new things to try. It’s especially bad when we try the wonderful new treatment, and it DOESN’T WORK! Then we get to deal with their disappointment and questions about, “Are you sure you’re doing it right?” or “Did the doctor give you a strong enough dosage?”

Healthy people mostly only have experience with things like colds, flu, and infections; with maybe a few injuries thrown in. For simple stuff like this, it’s easy — take a few pills for the symptoms of the cold or flu, and in a week or so, it’s gone; take an antibiotic for about 10 days, and the infection is CURED. Injuries involve some down time for healing, and maybe a little physical therapy, and everything is back to normal. Because this is all the experience they have with illness, they assume that ALL illness is like that.

I call it “the antibiotic theory of chronic illness.” The idea seems to be that everything has a “cure”, all you have to do is find the “right” treatment and whatever you have will go away forever. Your life (and theirs) will go back to “normal,” and you won’t be sick any more.

I really wish it was that easy, but it isn’t. There is no cure for chronic illnesses, that’s why they’re called “chronic.” There are treatments out there that can help, but they don’t help everyone. Each person is unique, with their own constellation of diseases, syndromes, and co-occuring illnesses; and they each require a different mix of treatments. Fibromyalgia, Rheumatoid Arthritis, Chronic Fatigue Syndrome, chronic Lyme disease, Reynaud’s syndrome, Multiple Sclerosis, Bipolar Disorder and dozens more; all with their own set of symptoms, all with different treatments.

Even better, two people with fibromyalgia may need totally different treatments because the fibro presents differently for them. One may have serious pain issues and fibro fog; while the other has very little pain and severe fatigue with some cognitive issues. Then throw in an inability to tolerate some medications because of allergies or side effects, or financial difficulties that make it impossible to afford some treatments. Now start adding in other medical problems . . . it gets very messy, very quickly.

What works to help the fatigue of my fibro may make the bipolar disorder worse (one of the common medications for FMS is almost guaranteed to cause a manic episode in someone with bipolar.) The steroids that are frequently used for the pain of fibromyalgia and rheumatoid arthritis can also cause manic episodes, as well as increasing the appetite (not good with diabetes or hypoglycemia, since eating more can cause blood sugar spikes followed by a crash.)

Exercise? Well, maybe. There are a lot of water aerobics programs out there for fibro, and they actually do help, but if it’s a mixed class at a fitness center where members do laps in the pool or some of the participants have MS, the water temperature may be kept so low that it causes even worse pain. (Many people with fibro have “broken thermostats.” Temperatures that are comfortable for others can be miserably cold, causing the muscles to tense up and leading to injuries from something intended to help.) Then there’s the reverse problem, where the temperature is kept warm enough for the folks with fibromyalgia, and anyone with MS gets overheated.

So how do you deal with the friends? There are some options, but, like the various treatments for our illnesses, there is no “one size fits all” way to deal with the issue. Each friend/family member will respond to a different method, and some won’t stop no matter what you do. Check back tomorrow for part 2, “8 Ways to Handle Unwanted Treatment Advice”

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