Right now, I can count myself blest. While Rheumatoid Arthritis has taken away my original livelihood, I am slowly sculpting new avenues for myself. I have avenues for writing to explore, and avenues for artwork, and avenues for antique sales. In all of this, I am single but living with amazing parents. Because they are aging they have problems of their own. We have lived through the premature death of my brother from complications of autoimmune diseases, and I haven’t been ridiculed or demeaned or made to feel that I am a lazy slacker. I would like to think that had I found a spouse before this, that he would have been loving and supportive in my illness much like my parents. But frankly, there are so many out there that are not supportive, that I wouldn’t feel really secure in that.
I cannot count the number of times I have seen posts in my support groups about unsupportive spouses and significant others. It is truly sad. Because illnesses like mine and others are beneath the surface, loved ones assume that anything you are going through is inherently fixable. “Why don’t you just…?”
I often see people in my support groups frustrated and exhausted because they are expected to care for themselves and the kids just the way they always have despite fatigue and chronic pain. And if you don’t quite meet the spouse’s expectations, you get told you’re lazy or incompetent. Sadly, this kind of situation may lead to divorce. I honestly don’t know how my fellow chronic illness sufferers survive in that kind of environment.
This is a kind of closet verbal abuse that must stop.
With the movements to stand up for women, how about those with autoimmune disease? Men and women? Fifty-million of us have autoimmune diseases. Where is our hashtag? Don’t those of us who suffer in silence deserve a voice? How about…