So, I was diagnosed with fibromyalgia when I was in my early 20s. I was showing symptoms long before that. And I had chronic pneumonia from my childhood, on top of asthma, ADHD, and depression. I was working for a company that had me commuting roughly 10 hours a day, and I worked 8 hours a day. But I loved my job and I was good at it.
My parents wanted me to come and visit and spend more time with them in San Francisco, which was an hour and a half ride by public transit (I don’t drive) each way, plus whatever time I spent with them. I often begged off due to fatigue, or due to pneumonia-like symptoms. See, I say “I feel like I have pneumonia,” which means that I feel many of the same symptoms of having pneumonia without having been to the doctor to get diagnosed. Having had as many cases as I’ve had, I can usually tell when it’s severe enough to warrant seeing the doctor, especially considering that seeing the doctor meant I had to work a half-day instead of a full day.
One time, when I was over at my parents’, they had left their email open. I made the mistake of reading it, and they declared that they believed me a hypochondriac in it. This was before my diagnosis of fibro, but while I was definitely expressing symptoms of it. Unfortunately, many of those symptoms resembled my mom’s, and she has MS. So they perceived me as wanting attention by pretending to express the same symptoms she had. This was not the case.
Finding out that my parents believed me a hypochondriac was awful. I cried for an hour or two, yelled into a pillow, the whole nine yards. But it was only the beginning of people not believing my invisible illnesses were legitimate. Regularly, I get looks if I choose to use disabled seating on a bus or in a theatre. I get those same looks if I’m walking with a cane, or heaven forefend, in a wheelchair, because I often get up out of the wheelchair to walk a little bit, and then sit back down.
The world believes that what’s wrong with me is all in my head. My physician, blessedly, is not one of them. But even my first application for SSI included the words “it’s all in his head.” I even had a doctor in the ER tell me that I “had a lot of fake problems.”
I’m here to tell you an important message. It actually is all in my head, in that fibro is overactive nerves that are messing you up for no good reason. There’s no way to see it. There’s no way to prove it. But that doesn’t, in ANY WAY, make it any less real or valid. I am still in pain. I still have fatigue, and lose my apetite, and have hot spots where it is agony to be touched. I still find it exhausting to spend time around people, or loud noises, or a lot of strong smells. I still have the taste of food altered by my illness, and have floaters in my vision that sometimes render me unable to see much of anything, and get fairly awful tinnitus periodically, and sometimes I sleep for days at a time basically, getting up to eat and go to the bathroom and nothing else. I still forget words and use the wrong words for common concepts.
My illness is real. It is invisible. But it is real. And it doesn’t matter what other people think of it, whether other people believe me or not. It’s real. Medicines designed to treat these illnesses work and help to alleviate my symptoms. Medicines designed to treat some of the symptoms (like pain medicine, which has a history of not being effective for most fibro-related pain, and is only for breakthrough pain) are not effective, as expected. Altering my diet some, attempting to do more stretching and exercises that are shown to be effective help alleviate my symptoms. My illness is real.
I never told my parents that I read that they called me a hypochondriac. It wouldn’t be helpful and would just lead to us fighting about it. But I can, in all honesty, safely say that my illness is real.
It’s a tough fight to go through, having an invisible illness and facing a world that doesn’t believe in it. I am not the kind of person for whom support groups are effective. I use mantras to remind myself that I have this illness, but that it does not define me. That my limitations are real, but that I can continue to live a fulfilling life nonetheless. I remind myself that the opinions of others do not define me either, and that it doesn’t matter what anyone else says, my illness /is real/. Never let someone else tell you what you’re experiencing when it comes to this sort of thing. It’s hard, but you have to stick to your guns and know that it’s your life, your experience, and it’s real.
And anyone who tries to deny it? Examine whether they are necessary in your life or not. Give them a good, hard look. Because chances are? They aren’t. And you will be much better off without them.
Always remember: Just because it’s in your head doesn’t make it fake or untrue. It is real.
