Help Wanted: Celebrity Spokesperson – Fibromyalgia

Those of us who suffer from Fibromyalgia (FM) get a lot of grief. Not just chronic pain, of which we get a lot, but grief, from uninformed people.  I have Fibromyalgia and Hashimoto’s  Thyroiditis, an autoimmune disease also known as Connective Tissue Disorder.  I, like so many other  Fibromyalgia patients also suffer from Fibromyalgia Fog, better known to the in-crowd as Fibro Fog. We begin a sentence and then forget what we want to say. We go from room to room looking for…..what? We forgot.  We start again. My children roll their eyes when they claim “I just told you that story” because they have and it sounds new to me. They could probably tell me the same story tomorrow and who knows if I will recognize the story or shake my head in new wonder. My sister sometimes complains that “you told me that.” I’m sorry, I believe you.” It may be hard for you to keep quiet once in a while and just let it slide but it is also hard not to take it personally and get your feelings hurt too. It’s not something we have control over, like muscle pain or stiff joints.

Apparently “Doctors” agree we “feel the pain” but the cause itself has people stressing out and arguing. Isn’t it just a total bitch that there are still people out there that think we are all whiney, crazy, uninformed, stressed out crybabies with the need to please?  Of course, they point out, we are mostly all women, not all, but mostly. Ignorant Doctors: be skeptical if you want to but stop judging us and read the NEW research, all of it.

I was diagnosed nearly five years ago. After a routine check-up  by my internist, that had my thyroid levels completely out of whack and my massive Vitamin D deficiency, she shrugged her shoulders. “I feel like I have the flu, without the fever” I would cry but she didn’t listen to me. My internist examined me and told me “there was nothing she could do,” and she clicked her designer high-heeled shoes and tap-tap-tap, left the room abruptly. She left me alone, sobbing on the exam table, unable to get up.

Since then I have seen Rheumatologists who do believe that Fibromyalgia is a real disease and that it is indeed painful. I now go to a Rheumatologist who is even “Fibro Approved” which means he is known for his sensitivity to both our illness and our feelings.  The very fact that he is kind and soft-spoken is a pleasure, he even returns calls promptly and is not overly aggressive to try new things, but is patient to see how I am reacting to one drug, perhaps changing the dosage, not the drug.  My Rheumatologist before him answered by-email only and said sternly “Fibromyalgia is a lazy diagnosis” and barked at me to start taking strong immunosuppressant drugs, one after another. Each drug had horrific side effects that left me unable to leave my house for two months.

If I could, I would only go to a Rheumatologist who actually HAS Fibromyalgia, for the very same reason I always chose a woman to be my Gynecologist and Obstetrician. It’s nice to have familiarity, empathy and understanding. Imagine this, if all the men who worked in the financial area were stricken with Fibromyalgia, a fairly debilitating disease, would it be a more credible illness to the naysayers?  Wouldn’t there be a sudden outcry for immediate research, more funding demanded, results and ultimately a complete cure? Would you still be saying that they were overstressed worry-warts? I think not. If male business executives got Fibromyalgia, stocks for Savella, Cymbalta and Lyrica would go through the roof. Why are there still people thinking that men are more credible than women? Look at all the research for heart disease for men and very little, if any, for women? Women get heart attacks too and the symptoms are very different but we don’t hear a lot about that either.

I don’t wish this illness on an enemy much less a friend or someone I admire greatly. I just would feel so much better if we had a  famous spokesperson with Fibromyalgia to champion our cause. I mean that sincerely. Is there any celebrity in the world that has the same symptoms and wants to represent us? You would help hundreds of thousands of people all over the world.  Believe me, I LOVE and admire Oprah and don’t wish Fibromyalgia on her but IF she did have it, (or any high-profile celebrity: Ellen Degeneres, Dr. Oz, Meredith Viera, Barbara Walters, David Letterman, Conan O’Brien…) wouldn’t the world sit up and listen more carefully and intensify the search for a cure?  Try calling Oprah a whining crybaby. You couldn’t and you wouldn’t even dare. Maybe there will be a time when someone champions our cause, our invisible illness. In the meantime, wouldn’t it be something if we heard: “Next On Oprah, My Struggle With Fibromyalgia.” Maybe then we would get the understanding, empathy and research we so desperately need.

Advertisements