Not long after my health problems started with injured hips the advice started flowing in. Long before I knew I had a chronic illness, many well-intentioned friends had a hard time believing that someone my age could have hip problems. One man told me that I probably just something “caught up” in there, whatever that means. Others told me that it was probably my back, and I needed to see a chiropractor. Eventually, others told me that if I gave up diet sodas or followed this special diet all my problems would go away.
They all meant well, but the problem is not a one of them had any idea what they were talking about. Even some of my early doctors did not understand what was happening to me and gave me poor advice. One person brought me magnets. Another counseled me on some kind of electrical impulse therapy. Someone gave some advice that I thought was the craziest I had ever heard, so crazy I thought I would never forget it, but as I’m writing this I can’t remember what it was!
The advice never stops. Whenever you share your story with someone new the advice almost always follows. It is given with no understanding of your medical condition.
I realize that some people do well with alternative medical approaches. I have tried a few, admittedly halfheartedly; acupuncture, deep tissue massage, chiropractor, a few elimination diets, etc. I did try those magnets. I think there are times when I find the mood to try something new. After all, what do I have to lose?
But most of the time I hear the newest suggestion and just listen politely. I already know that I have no interest in their latest simple solution to my complex medical condition. I know it won’t work because it has no bearing on an autoimmune disease that attacks healthy joints and tissues. My doctors barely understand it and we are working together to do everything imaginable just to keep the disease at bay. Your encounter with a new type of therapy that helped you overcome your back injury is irrelevant to what is happening in a body at war with itself.
We live with our diseases and have come across almost all the relevant helpful advice. We know how to use the internet and to network with others who have the same disease. If it seemed reasonable, we probably tried it. We discussed it with our doctors.
But I am not really writing this blog to “Them,” “Them” being the always willing and rarely helpful friends with their advice. I know how it feels to have your illness reduced to someone’s campaign against diet drinks. My suggestion is to smile and say, “Thanks for sharing that. I’ll give it some thought.” You don’t have to give it any more thought than it took to say that. If you try to explain the folly of their ways, they likely won’t get it, and they will think you are stubborn and ungrateful.
I know how it feels to be made to feel like you are not doing everything that you can to help with your health. If you just did this or that, then you wouldn’t hurt all the time. I know how much that diminishes your struggle. But don’t take it out on “Them;” they don’t know because they haven’t been where you are. They probably really do care and just believe that if you listen to them that you will be well. No matter how delusional that thought may be, they are merely trying to help.
Try new advice only when you feel like it is something you’ve been looking for. Otherwise, maybe just let it go “in one ear and out the other.” Just don’t forget to smile!
What’s the worst advice you’ve received?