Things You Shouldnât Say to Chronically ill/Disabled People
Donât Ask âAre You STILL Not Well?â
Our conditions are âchronicâ This means they are possibly never going to heal. After a few years you should catch on to this
Donât 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 doesnât mean we havenât tried it. The fact that we havenât chased after every suggestion doesnât mean that is the one thing keeping us unhealthy⊠we get a LOT of these. A LOT
Donât Get Angry When We Say Weâve Tried Everything You Think OfÂ
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. Donât feel so shocked that weâve already considered every idea youâve come up with in 5 minutes!
Donât Tell Us About How Weak Our Generation is and How Back In Your Day You Just Fought Forward and Pretended it Wasnât There
1) You are NOT chronically ill. Your problems and my âproblemsâ are my ânormalâ
2) Is being stupid and self destructive really something worth bragging about or emulating?
Donât Tell us About Your Auntâs Cousinâs Nephewâs Friend Who Has Our Condition and Still Does The Things We Donât
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, Iâve read the statistics. Majority of us are not able to do what we are not able to do.
Donât 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 donât need you reminding us what a burden weâre being or telling us we could totally get past this if we just tried. We are trying. And we do get that youâre 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 canât 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 Canât Stand Then Sit To Talk to Us
This isnât a demand, but if you want to put us more at ease, it really does help. It is something I myself didnât 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 peopleâs crotches as they tower over you. If we are sitting down, it doesnât mean you need to walk away because we are done talking to you. It means we needed to sit down. Sit down with us. Itâs relaxing. Weâll 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
Itâs 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 canât 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 thereâs a whole Paralympics thing! (Though not me⊠Donât talk to me about sports. Iâll have literally no idea what on earth youâre talking about)
Roll With It
If you ask if we want to go to a museum with you, and we reply âOh Iâd love to, unfortunately I canât stand that long.â or âUnfortunately I get my nerve blocks at that time so Iâll be out of it for the day.â Donât solemnly go âOhâŠ.â 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 isnât a trigger point, it is literally just our weekly schedule. Itâs almost the same as saying âOh I canât, I play golf Saturday mornings!â 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 donât think of. But we are still people. We donât expect you to know everything we go through, or have the cure we havenât thought of⊠We just want someone to connect with and have a pleasant conversation with! Just be you!