No one ever teaches you how to mourn your health. You just realize one day that it’s gone, and you are not the same as you were before. Most days, it’s all right, but then something happens: you can’t go to dinner with your family because you’re nauseous, you can’t go hiking because fatigue and pain. You can’t you can’t you can’t, and then it hits you: you are irreversibly changed.
What I Wish Healthy People Knew About Being Undiagnosed
OK, see, here’s the thing. Most people with chronic illness wait years to get a proper diagnosis. They know what we undiagnosed peeps are going through. They can empathize with the worry, the frustration, the impatience, the hope and hopelessness roller coaster. They get it.
But I don’t think a lot of healthy people quite understand.
Just because my illness hasn’t been named yet, it doesn’t mean I’m healthy.
Not knowing WHY I have symptoms doesn’t make the symptoms go away. It doesn’t mean I’m not dealing with a lot of shit.
And I’m dealing with this shit not sure where to turn for support (not a lot of support groups for “I dunno, but shit’s going sideways”). I’m dealing with this with no treatment options. The best I can do is try to manage my symptoms with everyday, at-home methods (that may or may not make any bit of difference).
I’m dealing with an unpredictable and often debilitating mystery illness. I’m going to doctor appointment after doctor appointment and test after test and having to explain my medical history over and over again which drains what little energy I had left.
If someone you know says they’re sick, and they’ve been sick for months or years…for the sake of all that is good and beautiful in this world, just believe them.
If someone you know is sick and they don’t know what they have, just trust them that while they may not know the name of their illness, they most certainly do know how it affects them and what they can and can’t handle doing (even if that changes from day to day).
If someone you know is struggling with a chronic mystery illness and you want to be a good, supportive friend just be T.H.E.R.E. for them.
T- trust them when they say they’re sick
H- help if they want your help (but don’t always wait to be asked for help, offer specific tasks you can do like unload the dishwasher, or take their dog for a walk)
E- expect nothing (if they want to talk about their health, listen, but nobody owes you their private medical history)
R- respect their limits (if they say they can or can’t do something, believe them)
E- endure (no matter how many times plans get cancelled last minute, not matter how long diagnosis takes, no matter how frustrated you are by their limits, I promise it’s even more frustrating for them so be patient)
Also, pro tip: DON’T TELL THEM WHAT YOU THINK THEY HAVE AND HOW TO FIX IT WITH YOGA/GREEN SMOOTHIES/REIKI/WHATEVER.
The default should be to trust disabled people when they say they need accommodations. Overwhelmingly, people are not faking their disabilities, and it’s so aggravating that we’re doubted first and only believed when we ‘prove’ ourselves.
Today I went to see the new XMen movie, for the second time. I was with my sister, in my wheelchair, waiting for our popcorn. We were the only people standing there, so we started up a chat with the girl behind the counter, who had also seen XMen already. It was friendly.
When we realized the dispenser was out of straws, an older 40-ish woman came out of the back room to fill it. She walked past me in my wheelchair and said, in a most infantilizing voice, “Are you excited for your movie?!” and then reached out and stroked my shoulder and did this weird sort of jazz fingers thing on my arm, then said, “I bet you are!” and kept walking.
Here’s the thing: When one of you comes to my ask box about this kind of behavior, I am full of advice. But when it actually happens to me, I freeze. I gritted my teeth and didn’t say a word until we were in our seats, when told my sister, who hadn’t seen it happen and was appalled to find out. I could still feel the woman’s fingers on my arm, like an after-taste I couldn’t shake. I could feel her for awhile after that. I felt fidgety and wired from it.
And humiliated. And I beat myself up for not saying something. For being able to be an advocate here, in this space, or for others, but not for myself. For letting her think this was okay. For letting her walk away thinking, “What a sweet little girl,” about me, a 38 year old grown-ass woman, who is not a child just because I am in a wheelchair.
And you know what? If I was a child? Don’t fucking touch me! Don’t touch disabled people without their consent. Don’t touch children without their consent. Don’t touch people, any people, without their consent! And don’t infantilize people because they have a disability. Don’t talk to me in that voice because you see me in a wheelchair and think I have the mental capacity of a four year old. Don’t talk to grown adults with developmental disabilities in that voice either. Don’t talk to actual fucking four year olds in that voice.
health-deprecating: spoonie signature style of humor, necessary to cope with a life of illness, but that makes most healthy people really uncomfortable or respond with a sad face instead of laughing along with you which is really a buzzkill.
netflix and pills: a typical day off/ hang out sesh.
illnesia: when you have an invisible chronic illness and you tell healthy people about it but a week later they develop amnesia that they were ever told. repeat x infinity.
brainfrog: when your brains are so mushy that you can no make words? spell?? think??? ribbit????
grandma candies: this is what I call my chewable antacids, but it can be applied to many medications.
Spoonie Problems: When you don’t feel good, but you can’t tell exactly what the problem is. You just don’t feel right. And then you tell someone and they ask, “What’s the problem?” and you’re like, “I just don’t feel good.” Because you don’t know what the problem is, you just don’t feel good. Ugh, I don’t feel good, you guys.
Reminder to everyone with a chronic illness (and everyone in general): you can fire your doctor. You are under no obligation to see a doctor again who is telling you that it’s all in your head, or who doesn’t believe you. You deserve to be listened to, and you deserve to be believed.
No matter how mild your condition you are family.
There is no such thing as “not sick enough” to be part of our community.
You can work multiple jobs and have energy to exercise and still be a spoonie.