grief, disability and gratitude
I don’t know if it’s the weather, hormonal, my increased pain recently, or because I finally have enough space between now and a year ago when I just tried to survive (a year on Infliximab soon!), but I am currently grieving my future.
It doesn’t have to be grim, of course, and I should probably worry when I get there, but my mind goes there anyway.
I think about the fact that I am immunosuppressed for life, as I need this treatment for the rest of my life. How will that affect me in future sick seasons? Future pandemics that are sure to come? I have seen enough how society treats the immunocompromised/suppressed during the height of the Covid pandemic. Who cares, they’re just old people right, and people die, I wanna dance and go shopping! Never mind that that includes people of all ages anywhere, like cancer patients, people with HIV, people with autoimmune diseases, people with donor organs, and more.
I think about growing older and getting sicker in a system that, even after a huge pandemic, has refused to properly invest into healthcare and hasn’t stopped privatizing hospitals. A future in which health insurance will be even more expensive and probably covering less and less.
I see a future in which hospitals keep deteriorating, personnel thinning even further, overworked and underpaid, maybe even lacking basic qualifications one day because they can’t find qualified people that want to subject themselves to this. I don’t want to have to give my life in the hands of people who are tired, resentful, and seeing me as a burden. I don’t want to have to rely on someone that gets exploited so hard that mistakes become likely.
I don’t know why people aren’t more mad about this and doing something - these are the people who help you in a medical emergency, a sudden onset illness, an accident that leaves you disabled, and who might one day come to your home to care for you or a loved one. I don’t want robots to do this. I know my future will rely a lot on medical professionals, just not exactly to what degree, and it scares me when I see how much we burn them out and take them for granted. The current system is reckless and dangerous, and aiding in the abuse of not only the personnel, but the sick people in it too.
I think about the fact that cancers and benign tumors have become more likely for me. Even when harmless by itself, they can still grow places that significantly impact nerves and other important parts. I think about the risk of demyelinating diseases that my medication brings, and I realize that I should make the most of my ability to move, just in case. One day, I might need a wheelchair, or have trouble walking, at least. I think about how fragile the spine really is, and how much consequences damage to it really has - pain, mobility, feeling - and I wonder how much horror is ahead.
As the breadwinner in my marriage, I wonder: What if one day, I can only work reduced hours, or none at all? Will we be able to handle it? Would my wife find a job that could support us and still enable care? Would disability payments be high enough to supplement it?
It’s so easy to point at government or health insurance websites or flyers and go: See, they have programs and options for you! But you only get to truly find out how accessible and helpful those are when you need them. Their existence is good, but only a small part. Suddenly you find out: Long waiting list. A huge pile of confusing paperwork. Interviews. Checkups by their approved doctors. Hand in more documentation. Re-hand in that form you filled out wrong. Getting statements from your doctors. Months or years of waiting for a decision. Denied, trying again. Approved, but only for a year, then you need to do it all over again. Only a low sum. Only this and that.
These options do not exist to truly help disabled people and their families - they’re crumbs to shut people up, for healthy people to go “but these things exist for you - if they don’t help you, then you’re probably not sick enough”. They treat you like you’re acting entitled when you just want the bare minimum. These are the things that get reduced and cut first, under the guise of “misuse” and “fraud”. The people who truly need it seem to barely get a cent out of the system they paid into for decades and give up or die halfway through, but allegedly, there are of course issues with lots of fraudsters getting thousands out of it somehow, so all of us have to be punished.
Disabled people aren’t sitting at home like on some great vacation spending your money on frivolous things. Many have to count every cent, are isolated and lonely at home, barely go out, and are still suffering from their illness. Many feel useless to society, a burden, and guilty. Many haven’t seen friends or family in years because they turned away when things got dire.
And every couple months, they have to read on social media or in newspapers how abled, healthy people gamble with their lives - talking about disabled people like they can’t read that. Cuts to what they rely on to survive as if they are a hypothetical problem instead of a real person. Do you understand the financial stress of everything always getting more expensive, but your benefits not getting adjusted? Having to reapply and hope for the best every 1-4 years? Having to justify yourself over and over again for the same disease(s)? Or, possibly being right in the gap between unable to work but not deemed sick enough for benefits? No financial stability, no ability to plan ahead longterm, no trust that it is being taken care of. Just being a bit safe for now.
Sick people are forced to live lives that others would not even let their pet live. Accused of faking it, denied claims on a whim, treated like an addict for pain medication, seen as a freeloader, not allowed much dignity; and then at the end, kept alive against their will because assisted suicide is “wrong”. Too many sick people live a life too shit to live and not bad enough to die.
I know that I will get more sick and disabled as I age, and I have to come to terms with the above - that it will happen to me too. Right now, I can still hold a job, I can grocery shop, I can treat myself to something nice, I can exercise at the gym and dance in the kitchen and travel with my wife. But for how long?
And also - have you realized that this could be you, too, as you keep putting off taking care of yourself as this thing you can do later when the consequences hit? Visualize the future you will realistically have if you continue like this, and if you want that. Please be kind to your body, do what is best for it as much as is feasible for you, even if it’s hard. Delay having to be sick and reliant on the medical system for as long and much as you can. Be grateful for what you still get to do and have.
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Published 25 Sep, 2025