One of the biggest problems with having fibro is not knowing when to go to the doctor. This is followed by seeing “miracle cures,” life-changing healthcare for people who had no hope, and knowing that will never be me. I work at a healthcare facility and hear about those stories all the time. However, my personal biggest frustration is when I hear about withholding healthcare for people who need it because of politics. As someone who wishes for an available medical solution to my problems, the idea of making any safe, tested healthcare illegal is abhorrent and an indication of the mental and political health of our society as a whole.
Abortion is not a political decision. It’s a moral decision, and moral decisions can’t be mandated by any political system, much less one that’s as divided, unreasonable, and uncommunicative as ours is. As soon as lawmakers are unable to understand and empathize with both sides of any argument, they should step down. As soon as they make decisions based on their own morals (or sometimes lack thereof) they should step down. The post-Roe abortion environment is threatening not just physical healthcare but also mental health care for women everywhere – for example a proposed bill in Oklahoma banning abortion after 30 days. On top of that to hear a statement by a Texas politician declaring medical treatments for transgender children “child abuse” and thus threatening access to medical care by transgender children is not just disgraceful, it’s criminal. Since a lot of this crap politics is coming from the same people who fight against wearing masks and being responsible during a pandemic — it’s like life-threatening irony.
The fibromyalgia community, who have dealt with a lack of healthcare availability and have fought against being labeled as whiners and malingerers, should stand up for all the people who are being refused necessary healthcare because of small-minded, hypocritical, greedy politicians.
I don’t know how hashtags work (because I’m old) but #StopMakingHealthCareIllegal and #FibroFighters.
There. Rant done for the day. I don’t care who I pissed off.
The past couple months has been spent in doctor’s offices and hospitals with my dad. Just a brief rundown: He’s 85 years old (looks maybe 75), former long distance runner, very active when he was younger. He has had problems with chronic subjective dizziness (CSD) and chronic pain for maybe 45 years. He taught himself to walk and run after the CSD stepped in because there was little the medical field was doing to help conditions like that at the time. He’s a very determined person. But pain really got the better of him several years ago. And age is messing with him too, so there’s a lot going on right now. That’s the very very condensed version.
I’m really very lucky because my chronic pain started early enough that I honestly do not remember what to be pain-free feels like. My dad, on the other hand had years of pushing his body to do what he wanted without too many consequences (I won’t mention the permanent damage to feet that running will do – but it’s a choice). He can remember the freedom of movement without pain. That makes it worse, I think.
Dad and I have had very different courses. My doctor almost immediately suggested fibromyalgia after all the stuff I didn’t want were ruled out (Lupus, MS, etc). She handed me a book, told me to read it and let her know what I thought. Fibro has not been a consideration for my dad even though he definitely fits the profile of a fibro sufferer. He is, after all, male. His doctor was male. Fibro isn’t a male thing. Right? (Wrong, but I’ll leave it for now.) The difference between us became very basic: I had to learn to ignore or just live with pain and how to discern if I was actually injured/ill; my dad stayed in the doctor’s office talking about his pain, getting tests, trying meds. He spent a week in a Pain Clinic where he learned he had to do work through his pain (what I was already doing – I got turned away from the Pain Clinic). However, by then the pain was so ingrained in his mind as a bad or dangerous thing, while he could move more freely, pain was and is still his focus.
I will never say what the “right” way to live with pain is. Everyone has to find their path. Between my dad and me there are generational, social, and gender differences which account for our two different courses. I’m just not too sure those are legitimate reasons for having such a varied course. Sitting with my dad listening to him detail pains to the doctor that have nothing to do with the current serious health concerns he has is frustrating. He is unable to describe pain or explain how bad a pain is. He was never given those tools because all he had to do was say “my foot hurts” and he would get a test. When I say my foot hurts, I’m usually told it looks okay, let’s just watch it. I’ve learned how to express disagreement to doctors when I need to. My dad never had to learn that. It was never an issue.
What I’m trying to say, I think, is my dad lost out on some very valuable chronic pain tools as he has gone through his course. At the same time, it has become very difficult for my mother who has to sort through all the pain experiences my dad has to help decide if he needs to see a doctor or not. Those decisions are becoming more difficult for them to make. So I’m lucky I’ve developed those tools even though they need to be sharpened every little while. And I can help my folks navigate while I learn about the double threat of fibro and age. It’s a learning curve – my dad hangs on tight when I drive around curves. He’ll just have to keep hanging on.