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As someone dealing with a litany of chronic health conditions, seriously, if you can avoid lifelong health problems fucking do it. You don’t want to find out what it’s like to have to go to doctors every week just to try and maintain basic functioning. You don’t ever “get better” https://twitter.com/karencheee/status/1308412243198062595
It isn’t just time consuming, it’s EXPENSIVE AS FUCK. I’ve spent thousands of dollars just on working on being able to walk and stand normally again. And it isn’t “fixed.” I’ll likely be dealing with CRPS in my foot/ankle for the rest of my life. And that’s only ONE problem.
And when you’re dealing with multiple problems, you often have to pick and choose which thing you’re going to focus on. Not because they are all an issue, but because there’s only so much you can do at once. It’s exhausting and a lot to juggle on top of everything else in life.
The ankle is still an issue, but right now, the fact that I wake up at night not breathing has to be a priority. That and the nonstop skin burning. And just because a doctor knows what’s wrong, doesn’t mean they immediately know how to fix it. It can take months, even years.
Going through and trying different treatments can take a LONG time because you can only try one thing at a time (otherwise you won’t know what is/isn’t working, and if you have an adverse reaction you won’t know the cause).
And you’re paying for all the treatments, even the ones that don’t work. Then there’s the fact that you’ll often have to end up picking and choosing treatments not based on what’s most effective, but based on what’s most affordable.
I can’t tell you how depressing it is to have a doctor tell you, this treatment would be incredibly effective, but I know it isn’t an option for you because it costs thousands of dollars with 0 insurance reimbursement.
Or even worse, sometimes you’re not choosing a less effective option because it’s more affordable. Sometimes you have to forgo your ONLY option because it’s too expensive. It’s hard to describe what it’s like, to go to your doctor every 6 months, and every time you ask,
has any new treatment come out yet? Finally one day they say yes. They can’t say for sure if it’ll work, but they’ve had a couple of patients have success with it. The catch? You can’t afford it b/c you don’t have a few thousand dollars laying around insurance doesn’t cover it.
If you knew for sure if it would work, sure, then you’d do it. It would be worth the money to have the pain relief. But you don’t know. And if it doesn’t, it’s not like you get a refund.
This is reality for a lot of people living with chronic illnesses. It’s a waking nightmare.
This is reality for a lot of people living with chronic illnesses. It’s a waking nightmare.
People will constantly ask you if you’re “feeling better” and you can’t ever actually say yes. Because that isn’t how chronic illness works. You have good days, and you have bad days. If you’re lucky, you get the illness under control, but that doesn’t ever mean it’s gone.
And every time you’re asked, you ask yourself, well... do I give them the real answer, or do I give them the answer that will make them the most comfortable? It’s a lifetime of deciding when and where you will be honest. Who you do and don’t have to pretend around.
Staying in lockdown because of covid sucks. The social isolation sucks. But living with chronic illness is a LIFETIME of lockdown and restrictions. The restrictions won’t ever go away. They won’t be temporary. There isn’t much I wouldn’t give to make my health problems go away.
Please, trust me on this. It isn’t worth it.
