There are days when I feel perfectly normal. I can run errands up and downtown or go on a field trip to Pittsburgh and walk around all day with our church. I can even have a run of such days where I live like a normal person for long enough to go to a writers’ conference or something of that kind, but those aren’t common. I usually have to rest for several days before and after a day like that, though, or it won’t happen. About half the time I need twelve hours of bedrest and a few more of couch-sitting per day, so I can homeschool my daughter, do my writing work, do a little housework or run an errand. Sometimes I can’t leave the house for a week or more.
Sometimes it’s exhausting just to exist. Being awake hurts. Saying “it hurts” hurts.
The colloquial name for my type of chronic condition is an “invisible illness.” A lot of people with chronic physical or mental health problems say they have invisible illnesses, because they’re not missing limbs or covered in boils. They look “normal” but feel sick. But I really don’t like that term, because my illness is highly visible. It’s apparent in every puffy, squashy, water-retaining fat cell on my bulgy body. It’s apparent in my blinking and fidgeting and talking to myself to stay awake. It’s apparent when I have to use ice packs to keep from getting heat exhaustion in a stuffy room and find myself sitting in a puddle of condensation, or when I have to step out of church for a moment to pace around or I’ll doze off. My invisible illness makes me stick out like a sore thumb. But it doesn’t make me look sick, and there are misunderstandings.
Sometimes, I’m sure, the misunderstanding is mine. There are only so many negative experiences you can have before you start to worry everybody’s looking at you. Fibromyalgia can make you anxious in the first place, and the state of living with it in public while trying to get anything done is bound to make a person a nervous wreck. And every time I’ve got myself convinced that no one is looking at me, someone lets on that they are. They’re looking at me and not understanding what they see.
Sometimes all they do is look– with caution as if they’re afraid I’m a drug addict, or with pity as if I’m road kill. Sometimes they say “do you need help?” in a worried tone, and I try to be courteous about it. Sometimes they’re downright wonderful– I’ve had compassionate people be wonderfully accommodating when they find out why I’m sitting down or leaning to keep from falling over.
And sometimes they embarrass me. Once a kindly man from our parish told my husband “congratulations to your family!” Michael just kind of blinked at him confusededly and the conversation moved on. We were in the car on the way home before my husband realized the man had seen my swollen belly and presumed I was pregnant. Now and then well-meaning people try to waylay my husband and me with quack remedies or suggestions of doctors we couldn’t afford to see in parts of the county we can’t afford to visit, and look hurt when we politely demure or burst out laughing. Once someone tried to get me to admit that the condition was all in my head, and all I needed was psychotherapy.
Once, after Mass at a church around here, a person gave me a stern lecture about how “shocked” everyone was by my disrespectful behavior “in the church.”
That one really hurt. I went home and cried.
I did my stretches. The video instructor told me to touch my forehead and thank my inner teacher, so I made the Sign of the Cross and thanked the Holy Ghost to Whom nothing is invisible, and Who will make all things plain one day. Then I collapsed into bed.
I would prefer it if my illness were truly invisible.
(image via Pixabay)
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