Things You Shouldn’t Say to Chronically ill/Disabled People
Don’t Ask “Are You STILL Not Well?”
Our conditions are ‘chronic’ This means they are possibly never going to heal. After a few years you should catch on to this
Don’t Tell Us About Your Miracle Cure
Yes we know about magnesium, crystals, epsom salts, and yoga. We are eating a balanced diet, we might even meditate regularly. The fact that we are still ill doesn’t mean we haven’t tried it. The fact that we haven’t chased after every suggestion doesn’t mean that is the one thing keeping us unhealthy… we get a LOT of these. A LOT
Don’t Get Angry When We Say We’ve Tried Everything You Think Of
We are not dismissing you and your value. We are not being smarmy or trying to throw a pity party for ourselves. We have been researching this condition for years now. Don’t feel so shocked that we’ve already considered every idea you’ve come up with in 5 minutes!
Don’t Tell Us About How Weak Our Generation is and How Back In Your Day You Just Fought Forward and Pretended it Wasn’t There
1) You are NOT chronically ill. Your problems and my ‘problems’ are my ‘normal’
2) Is being stupid and self destructive really something worth bragging about or emulating?
Don’t Tell us About Your Aunt’s Cousin’s Nephew’s Friend Who Has Our Condition and Still Does The Things We Don’t
These conditions have a VERY broad range to them. Some people will have them and live totally normal lives. Some people will struggle with them. Some people will consider even what I do amazing freedom and strength. The fact that the people you know who have this condition are doing things is probably because they are the only ones who are able to be in the places you go. Trust me, I’ve read the statistics. Majority of us are not able to do what we are not able to do.
Don’t Ask Us When We Are Going to Get Past This or be Done Making a Big Deal About This
Believe me, it is a full time job as a chronically ill/chronically injured person to not blame ourselves. We don’t need you reminding us what a burden we’re being or telling us we could totally get past this if we just tried. We are trying. And we do get that you’re tired of worrying about our issues. We are too. But unlike you, you can walk away and not notice it anymore. We have to live with this every waking minute. We can’t run away from this because this is us. This is our reality
Ways You SHOULD Talk To Chronically ill/Chronically Injured People
Just Talk to Us
Seriously. Just have a light conversation with us. It is stinking lonely going through this and we are always thankful for a distraction. Talk to us about what interests you. Talk to us about if you think whales burp through their blowholes. Talk to us about anything!
If We Can’t Stand Then Sit To Talk to Us
This isn’t a demand, but if you want to put us more at ease, it really does help. It is something I myself didn’t realize until I lost my ability to stand for long periods of time. People like to stand while talking. More to the point, they like to stand FAR away from anything you can sit on. Even if you are sitting, people like to stand to talk to you, and trust me. It is both daunting and kind of awkward talking to people’s crotches as they tower over you. If we are sitting down, it doesn’t mean you need to walk away because we are done talking to you. It means we needed to sit down. Sit down with us. It’s relaxing. We’ll talk for hours not distracted so much by our increasing pain and trying to awkwardly stand as long as we are sitting.
Talk About Things Other Than How Hard Our Lives Must Be
It’s not like we are completely against it. I notice other people walking with cool looking canes and want to ask them where they got them (cane envy as I like to call it). This is a huge part of our lives and we can’t avoid talking about it entirely because it does take up our schedules, choices, and more. But we are more than our suffering as well. We like to talk about movies, games, books, some even like to talk about sports! I mean there’s a whole Paralympics thing! (Though not me… Don’t talk to me about sports. I’ll have literally no idea what on earth you’re talking about)
Roll With It
If you ask if we want to go to a museum with you, and we reply “Oh I’d love to, unfortunately I can’t stand that long.” or “Unfortunately I get my nerve blocks at that time so I’ll be out of it for the day.” Don’t solemnly go “Oh….” and then sit their awkwardly thinking how you just ruined the mood. The fact that we casually mentioned something like that usually means we are feeling comfortable with you. To us this isn’t a trigger point, it is literally just our weekly schedule. It’s almost the same as saying “Oh I can’t, I play golf Saturday mornings!” Just suggest another date. Or another activity. Ask us if we have anything you might like to try. Just keep the conversation going!
Basically… Just Treat Us Like Friends
We have to deal with stuff you may not understand. We may have to make accommodations you don’t think of. But we are still people. We don’t expect you to know everything we go through, or have the cure we haven’t thought of… We just want someone to connect with and have a pleasant conversation with! Just be you!
