Diagnosing people in my head, and how to talk to them about it (or not)
I remember a book series from when I was a kid. The protagonists were kids (brothers? neighbors?) and each book was a different encounter these kids had with an alien. The last book in the series started with the kids noting that once they knew what to look for, they saw aliens everywhere. The lunch lady at school, the postman, their neighbor’s dog… They had no idea they’d been surrounded by them for so long, but now that they could see them for what they were, they couldn’t pretend they didn’t notice.
Sometimes I feel this way. I see the way people cross their legs or stretch their fingers, or how their elbows hyperextend and their skin is soft and stretchy, and I have to stop myself from handing them EDS pamphlets. Or they’ll complain about their headaches, fatigue, and sudden allergies to weird things like tomatoes and cinnamon, and I’ll want to send them to a mast cell website. Or someone will admit that their doctors haven’t been able to do much to help with their fibromyalgia, fatigue, and joint hypermobility, and I desperately want to tell them about the cluster of mutations causing EDS, POTS, and MCAS.
It’s a weird line to walk. On the one hand, speaking up might just help someone. I wish I’d been pointed in the right direction years ago. On the other hand, many people see it as an uncomfortable intrusion. No one wants to be told in a casual conversation that they likely have a genetic mutation that has potential to wreak havoc on their body and life and has no cure.
It’s tough to know what to do, for example, when a student or coworker confides that they’ve had unexplained health problems their whole lives, and they just so happen to fit the bill. I want to help them find answers, but don’t want to assume I know what they have or scare them. Sometimes I think, what are the odds that this many people in my life actually have a combination of these diseases? But, with some doctors estimating 17% of the population carrying it in some capacity, that’s actually quite a few. If I have 10 coworkers, it’s not unreasonable that one might have it. I’m always a bit afraid of becoming obsessed, though, and even when I do decide to have that conversation, it’s hard to know how to go about it.
Sometimes I find myself thinking of friends who I haven’t seen in almost a decade who had unexplained (or unsatisfactorily treated) symptoms that mirrored my own. The dear friend, diagnosed with fibromyalgia, who had almost exactly the same symptoms as what I now experience, and would often even get sick at the same as me, possibly because we were triggered by the same temperature changes, stressors, or smells. The one who briefly disappeared from school and friendships because of CFS. I want to reach out to them now, after so many years, and apologize for every skeptical moment, every time I thought it was “just” their depression, his misplaced faith in chiropractors, her apparent lack of symptoms. I do believe that I was compassionate and patient with them, but I didn’t understand their situations and, in my desperation to protect them and myself from their pain, assumed that my simple explanations/solutions were less “crazy” than their truths.
With the clarity of the medical research that simply did not exist ten years ago, I not only feel bad for not being the type of ally I now know is needed, but also wonder how many of them may actually have MCAS, which is so much more treatable than fibro, ME/CFS, and the variety of other unexplained illnesses. I want to tell them to try the diet and some simple medications -- could the crushing depression, fatigue, migraines, and constant full-body pain I witnessed in them as a kid be lessened or even eradicated? I have been diving lately into the world of epigenetics and coming to understand how a mutation may not actually be turned on until something, a virus or trauma for example, sets it into motion. Can this explain the sudden changes in health that I saw in these friends after such an event?
I haven’t yet reached out, partly because I don’t know how to reach some of them, without contacting a whole network of people, and partly because I’m afraid of reaching back into that part of my life. I can feel the emotions of 16 year old me boiling a bit even as I write this. Obviously, though, if I can help even one of them to find comfort, it’d be worth my discomfort.