get with the program
I wrote this 2 weeks ago while I was particularly sad about my situation and in a lot of pain; after keeping it in the drafts for a while to consider it, I felt like publishing it now because it's easy to just portray the hopeful, productive ill person to the outside world, but sometimes accepting that stuff is tough!
I’ve been complaining about being ill sometimes, about specific symptoms, about being unable to do stuff and being stuck in bed so much.. and the response I seem to get (whether outright or implied) is like “Duh, you are chronically ill, of course this is happening.” Like it’s the most normal thing in the world. As if everyone has already known it for ages and has readily accepted it, but I am lagging behind. “Get with the program already!”
I remember asking my girlfriend if it was particularly hard or difficult for her to care for me the past few months and she said something like “no, I mean you’ve always been sick a lot, so there’s not really a change.” How is this so normal for everyone else but me, the person actually experiencing it first hand?
I remember all the times I went to the doctor since I was a little child only to get dismissed. To be told they don’t know what it is and to just take Ibuprofen, or that I’ll grow out of it, that it’s stress, that it’s allergies. All the negative tests for rheumatoid arthritis. The lumbar puncture for testing for myasthenia gravis and multiple sclerosis. Multiple MRIs, ultrasounds, and x-rays throughout my teens and 20s for various symptoms.
So of course I am lagging behind, I guess. I was always told it’s nothing or something that would go away. Or something that could go away if I put the effort in - anti allergy treatment, hormonal treatment for imbalances, try another gut microbiome treatment. Do more sports, cut even more foods, change my mindset. Everything persisting despite doing everything I could just meant I wasn’t doing it enough or not right, I guess. Or I just had to wait a little longer, or be on the computer less (thanks mum!).
My healthy self was dangled in front of me like a carrot. Whether it’s doctors, friends, family, magazines or the internet - they all used to make it seem like the better, healthy me is just around the corner. If I just do xyz and wait, she’ll be there. I can eat myself healthy, journal away the joint pain, or whatever. It sucks right now, but it won’t suck in the future when it will all go away!
But now it finally has a name and it’s forever (until they find a cure), and there’s nothing I can change. It’s the biggest tragedy in my world right now and everyone is already so comfortable with it. I’m not! Yet. The amount of pain I was in the past few days pushed me to my limit and knowing this extreme low can happen again any time in the future is depressing. It can happen due to tapering of medication, side effects, the meds not working anymore or the illness getting worse. I’ve been sick and struggling a lot since forever, but I’ve been at should-call-in-sick-with-sick-note level since December, with a few days sprinkled in-between where I felt better.
And it’s not even true that I can “just find medication that works” and be set. The time to see whether it works, whether the side effects are bearable, trying out different medications.. it takes months, months where you’re just suffering. And then you’ll most likely need to somewhat settle or compromise.
Chronically ill people will tell you they’re fine. They’ll also tell newly diagnosed people “You’ll find medication that works and you’ll be fine”. Dig a bit further and fine for them means something like “I have daily headaches and I am always tired but at least it’s better than without medication and I can work!” But if you take the “fine” at face value, which healthy people or newly diagnosed people tend to do, you probably think they have zero symptoms or side effects and feel like a completely healthy person. There are lucky people like that, but depending on what chronic illness it is, I think that is rare. So I can’t even look towards people who claim to be fine, or know someone who is in a similar boat and is fine - they just don’t tell you that stuff! We all know asking how someone is is not asking for an honest answer and most people are not comfortable telling you about their massive diarrhea either. Living with the illness for so long has warped their standards as well. Now what they live with is a compromise they maybe wouldn’t have settled for a few years ago. The bar lowers.
I guess I was naive in believing my symptoms would be solved one day with some temporary treatment and that I am still grieving that, realizing there was never even the chance of the carrot existing. How unrealistic of me to expect to go out and have a life when I am chronically ill. How weird that I would complain about being in pain when that is so normal for being chronically ill. I guess I better get used to months stuck in bed, stolen from me, with a smile on my face.
Published 01 Sep, 2024, edited 36 minutes ago