Stigma

I was asked why there was a “stigma” attached to migraines. My answer was because it’s an invisible illness! If doctors can’t see it, they don’t believe it! Blood and bone are visible and easily treated! Doctors are visual. They heal, repair, and fix what’s broken in front of them. If they can’t see anything wrong, it’s that much harder. When there are no definitive tests, blood work, obvious answers, they’re stymied. This stigma is attached to all of these conditions, syndromes, illnesses including, but not limited to Fibro, CFS, chronic migraine, intractable headache, Lupus, etc.  Too many to list. You must find an empathetic, compassionate doctor with knowledge of these conditions and a willingness to take on your particular case, fight for the patient’s rights and spend the extra time with the patient. The doctor must be willing and prepared to take on the insurance company, who will doubt the diagnosis, demand expensive tests that won’t show anything, and drag their feet with approval and payment of claims. The doctor must also be willing to deal with the hassle of the ludicrous amounts of paperwork involved. To say it’s hard to find such a doctor is a huge understatement. I’ve been very lucky. My pain management doctor is caring, empathetic, very well educated in my particular illness, and I’m thankful to have found him! “Stigma“ is also the shame and embarrassment that the patient feels while fighting to be believed. People in general tend to doubt what they can’t see. “It’s just a headache!” “Take a Tylenol!” “Why can’t you work?!” It’s embarrassing and completely discriminating to have to prove to others, including Social Security Disability Insurance, that what you have is real, chronic, horribly painful, and debilitating. And life-changing.  I’ve lost many friends to my illness. What I presumed to be good, long-term, even “best” friends. They couldn’t handle me sick. Well, at least now I know who my true friends are. Be aware of how you treat everyone! Not all disabilities are visible! Our illnesses are real and so are our tears!

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