A friend of mine happened to mention that she was just diagnosed with fibromyalgia. This came as a huge surprise to me, because we talk for hours every week and she had never mentioned that she had been seeing all sorts of doctors. She always looks fresh and lovely. I had no idea.
I told her, “I was diagnosed when I was 23. We should talk.”
“Okay!” She seemed excited.
Then I gave it some thought. What would I tell her? She wasn’t doing any of the things that I was doing when I got sick.
I shared a bed with my first husband, a man who snored heinously all night long. (My symptoms dramatically decreased after our divorce). My friend is single.
I was obese. My friend is fit and works with a trainer.
I drank soda every day. My friend never does.
My diet was generally poor; I ate a lot of sugar and vending machine snacks, and I rarely ate vegetables. My friend eats clean.
My symptoms started after I took a bad fall. My friend’s symptoms seem to have popped up on their own.
I thought back to how cruddy I felt as a 23-year-old, and how much better I feel now. Twenty years have gone by and I feel like I’ve aged in reverse. I would be in so much pain sometimes that I’d need help sitting up in bed.
Now I train in martial arts, and we routinely do “sprawls” and “breakfalls” where we throw ourselves to the ground and pop back up over and over.
I remember the morning after I did a half-day counter-abduction workshop. I had been elbowed in the face a few times, among various other indignities. I was bashed and bruised on every limb. I used to feel that way all the time, for no reason, with no bruises to show for it.
That’s how I knew I would know what to say to help my friend. I understood how she felt. I could listen empathetically. I could give her advice on how to talk to her doctors without them treating her like a malingering mental case.
I’ve talked to other friends and acquaintances who have been diagnosed with fibromyalgia. It usually doesn’t go well. They will still say “You don’t know what it’s like” even though I demonstrably do! Like I would lie about having experienced chronic pain. Why? What would possibly be the motive of pretending you were ill and in pain?
[Getting away with things? Social loafing? Thinking that other people find it more interesting than any other topic of conversation? *shrug*]
The sad truth is that saying, “I used to feel the same way you do, and you don’t have to be in pain like that forever,” can come across as cruel. Why, I’m not sure. I only know it does.
My friend and I sat down to dinner. We talked about a bunch of other things. Then I brought the topic back to her. As a modest person, she found this uncomfortable. I told her I was worried for her and I wanted to help if I could.
I shared my experience from the mid-nineties, when a doctor told me that fibromyalgia was considered a “wastebasket diagnosis” and a psychosomatic illness. They only started to take it seriously when a medication was developed that could treat it, because hey, Big Pharma.
I shared all the factors I thought contributed to my illness, that did not affect my friend. That seemed to help her feel a bit better about her situation, that at least she didn’t have a thyroid nodule, that she didn’t have thirty-five pounds to lose. That she had health insurance!
I explained that having one frustrating diagnosis did not preclude having one or more other things going on as well. For instance, it was entirely possible to have fibromyalgia AND a food sensitivity AND a thyroid issue. It might be worth getting checked out for those. I have a friend who is allergic to onions and garlic, and another who is allergic to yeast and corn. Both of those conditions led to years of confusion, testing, and misdiagnosis, because there are a lot of symptoms that can indicate literally dozens of possible problems.
I talked her through how I tracked various metrics. This is because it can help to reveal patterns, and also because showing a doctor your metrics will grab their attention in a way that nothing else will. It says, “I believe in the scientific method” and it says “I want to get better” and it says “I will work hard to do anything that you prescribe.”
It also tends to solve problems when doctors won’t or can’t.
The last time I talked to a doctor about fibromyalgia, she said, “Well, you must have been misdiagnosed, because people with fibromyalgia don’t get better.” She tried to prescribe me anti-anxiety medicine. I suppose that’s because feelings of strength and fortitude from overcoming adversity somehow qualify as anxiety?
Whatever doctors are telling you, they aren’t talking to people/patients like me. If they’re talking to us, then they aren’t listening. I would think the obvious response to meeting a former fibromyalgia patient who does adventure races and martial arts, who has run a marathon, who goes on backpacking expeditions, I would think the response would be, “Hmm. Interesting.” Study me, I’m game!
There’s money in prescribing drugs to people. There isn’t really any money in “patients” who don’t take prescription medication and basically never need to visit a doctor. Just saying.
I told my friend that what she was experiencing is as bad as it gets, at least with this illness. She describes a feeling of broken glass under her skin. Nod, nod. It’s bad, but you’ve already lived through the worst. It’s not a wasting illness. It’s not like tuberculosis or MS or cerebral palsy. It sucks, sure! But it won’t put you on an oxygen tank and you won’t wind up in a coma.
Most importantly, I talked to her about the importance of high-quality sleep in becoming pain-free and eventually recovering. I shared all the things I do to set up my bedroom and sent her links to my preferred eye mask and white noise generator. At this point, I probably know more about sleep than her doctors do, since doctors aren’t really allowed to sleep. Whatever else happens, at least there’s one cost-free thing she can try to do that has zero side effects.
(Never mind that it’s the hardest one!)
What I gave my friend was information that has worked for me over the last twenty years. More than that, though, I gave her caring, understanding, and the knowledge that she can always come and complain to me. I share her sense of unfairness at the way illness can strike for no reason. I share her frustration with busy, condescending doctors who have no real answers. I share her desire to live a full life without the distraction of chronic pain. I can give her compassion. More than that, I hope I can give her a sense that it gets better.
I've been working with chronic disorganization, squalor, and hoarding for over 20 years. I'm also a marathon runner who was diagnosed with fibromyalgia and thyroid disease 17 years ago.
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