Dealing with an invisible illness. I’ve just read an extremely good article on this on WebMed. Along with comments posted by other people I posted this one too.
“I’ve been extremely lucky in the 18 years since being diagnosed with fibromyalgia. My family has ridden the health roller coaster so much with me that they automatically said, “What can we do?”.
Before the fibro I had Crohn’s disease that resulted in an ileostomy in 1981. I think that helped build understanding into my depleted immune system.
My husband, bless his soul, has looked at me quizzically and with pity once in a while but that’s OK. I know he gets frustrated once in a while when I can’t do something he or we have been looking forward to. Through it all he’s stuck with me for almost 43 years and I know of some who haven’t been that lucky. Our kids are grown and have families of their own but they try to understand as best they can.
Now this isn’t the case with people outside the family. I, too, have been subjected to members of the medical community telling me that, “It’s all in my head”. I’ve had co-workers that admire me for working through my pain and I’ve had those that give the, “You don’t look sick, so what gives”, statement.
I have someone ask me almost every day, “What is fibromyalgia and how does it make you feel”. When I explain my symptoms they will say they’re sorry or I’ve even had a few shudder.
Fortunately people are becoming more educated on fibromyalgia, lupus, and many other invisible illnesses. I’ve found that educating the people around me is the key to being accepted and not being looked at like I’m a slacker or hypochondriac”
Dealing with an invisible illness isn’t easy. Any of us who have one can attest to this. When I had Crohn’s disease it was evident that there was something seriously wrong with me. I lost a tremendous amount of weight, couldn’t eat, was in the bathroom all of the time and my husband called me Olive Oil.
After I had the ileostomy surgery I became involved in our local ostomy organization and began educating people on Crohn’s disease and ileostomies. I trained people to visit patients before or after surgery so the new patients could overcome their fears about having such a body altering surgery. This experience taught me that sharing experiences and knowledge on a specific disease is the best way to get people to understand what you are going through. I have carried this over in my years of dealing with fibromyalgia.
I don’t mind explaining why I’m so tired I can hardly navigate, why it hurts to shake hands or be hugged, why I might seem depressed some days, why I don’t always think straight or get lost going somewhere I’ve been many times before, or why I’m a bit just plain bitchy sometimes. When I say I have fibromyalgia about 50% of the time the person will say, “I’ve heard of it but don’t know much about it”. I use this as a teaching opportunity. If someone makes that comment I’ve discovered they really want to know more so they can understand.
I’ve found that hiding the problem just makes people wonder what the heck is going on. If people are left to wonder that’s when comments like, “It’s all in your head”, “Get up and get busy, you’ll get over it”, “God, is she lazy”, or “What a slacker”, pop up.
I, like everyone I know with fibromyalgia, work through our pain as best we can. Some days it’s OK and others it’s like someone used me for a punching bag. The worst days are when I ache all over and it feels like an electrical current is running just under my skin. Even on those days I don’t want pity, I want understanding, and the only way I’ll get that is if the people around me know what I’m feeling. In other words, don’t keep your pain to yourself all of the time. No one, including me (I hate self pity) likes or wants whining; but, if your symptoms are put in a factual way that conveys how the pain is effecting you on a certain day most anyone will try to understand.
This is especially true in the workplace. If your boss and co-workers don’t know what you’re going through it’s hard telling what they will be thinking. I recently lost a job because I wasn’t forthright enough with explaining my symptoms and how they effect my ability to work at certain things…fibro fog was a son-of-a-gun. Besides, like I said before, education is the only way people are going to know how you are dealing with an invisible illness.