I was making dinner, frustrated with how much of a struggle it is to make food sometimes, when I had a flashback to at least 15 years ago on a different forum.
I had been trying to explain how bad my health problems were, and how tired I was all the time. I said that sometimes it was all I could do to make a meal; putting together a sandwich, chips, and a salad took all the energy I had, and sometimes I had to sit down multiple times in the middle of doing that.
Someone replied, roughly, "well, if you can make a salad you must not be that bad off", and immediately several others chimed in to agree that if I can make a salad, I must be in decent health, because they don't always have the energy to cut up multiple different types of vegetables, so I must be doing better than I think if I can do all that.
Thinking about those replies still makes my stomach sink with fear. Of being called lazy, of people saying I'm faking my symptoms, of people expecting me to burn myself out to prove that I'm not capable of living up to their arbitrary expectations because they made assumptions based on their own biases.
I said "salad" and they heard lettuce and carrots and cucumbers and tomato and onion and croutons and dressing and God-knows-what-else. My actual "salad" was pre-washed romaine from a bag and ranch dressing.
It is so frustrating having to deal with the performative bullshit that people expect when you have chronic health problems. You have to look and act just sick enough for them to believe that you're not healthy, but no worse, or they might accuse you of being dramatic, or just not want to interact with you at all (because it's so stressful being around someone who is struggling). Which isn't easy, since every single person you interact with will have their preconceived notions of what you're supposed to do, and not do, and say, or not say, when you're disabled/sick/whatever. And that's not even getting into trying to accurately communicate with healthcare professionals, who may or may not have a hidden level of hostility based on person bias, or what they read in your records. (Especially for someone like me, who was brought up with alternative medicine and it's practitioners. Which means I speak a different healthcare language. Alernative-medicine-English sounds like mainstream-medical-English, but they are not the same language, and most doctors struggle enough realizing that they no longer speak basic English when they're talking about medical matters. The same communication gap happens to people who get really into computers, niche hobbies, theology, different theologies, etc. You can say words the other person recognizes, but they mean subtly, or even significantly, different things.)
And anyone who says, "well, you just shouldn't give a shit what other people think!" has either never been dependent on someone else for anything in their entire life, or is fucking lying to themselves about how little they care. Do you care what your boss thinks? What about the employee who has the bosses ear? Do you care what rumors people are spreading about you if it means the difference between getting a raise and getting fired? Maybe you're pretty confident you can always get another job with whatever unique skills you have, that are always in demand no matter what people think of you. What if the power company could cut off your electricity because they think you're being too wasteful? What if stores could refuse you service because they think you're lazy? If someone could take away what you need to survive, because you didn't choose the right words to describe your health, how secure would you feel about your life? If you're really not dependent on anyone's opinion of you, what fucking fantasy world do you live in, and what wardrobe do I have to fall through to get there?
If you were struggling to stay afloat in a swimming pool, would you try to swim across a lake to prove that you'd go under and need rescue? That's what my life has felt like, repeatedly. And I always hear "but you got so far before you almost drowned". As if having my lungs filled with lake water, again, is going to do me any good in trying to get to the far shore.
That's all about the past, but I don't really want to get into the present. I'm stable. Currently no one is demanding I try to do more than I think I'm capable of. I'm just worried that I'm not doing enough to improve before I have to do more. I'm worried my parents will die before I can take care of myself. I'm worried I'll always be alone, romantically, because my current life state isn't conductive to meeting women, and even if it were what woman would want to date a guy who can't really even take care of himself, let alone hold a job? And who also doesn't have any sympathetic reason for being disabled. I'm not recovering from cancer, or a car accident. I don't have some degenerative disease. I just have anxiety, avoidant personality disorder, and other mental problems, along with poorly treated allergies with some unknown amount of physical illness caused by ongoing water damage and lots of mold in my last apartment.
TL;DR The holidays are once again reminding me that my life is very small, and I do not know how to change my life or myself fast enough to be sure the progress I'm making will be enough.