Editor’s Note: Ooh typing out editor’s note makes this seem very fancy. May is Ehlers-Danlos Syndrome Awareness Month, so I asked my followers what topics they wanted me to discuss about EDS or chronic illness/disability. A bunch of people asked me to write about how to be a good friend to someone who has EDS (or any other chronic illness). There are some basic tips I can offer like: trust that we know what’s best for our bodies and health, put a bit of effort into learning about our disease and how it can impact us, and don’t act like you’re some sort of hero for being friends with a disabled person. But I have been pretty tired lately and writing an actual long blog post is not in my foreseeable future, so I decided to ask my best friend Jonny if he could write a blog post for me. I deem Jonny very good at friendship and someone who does a bang up job of supporting me through the good and bad, so he wrote a fun, satirical piece for me to share with other non-disabled, non chronically ill humans who may be wondering how to best navigate being a good friend to someone who is sick/disabled.

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Okay, don’t freak out.

I know, I know. You found yourself a potential friend. Good for you! 

But, it turns out they have a chronic illness. Something called…. Elders Dances Syndrome? (Sounds funky, but no, that’s not it.) 

All her Danone syndrome? (Are they allergic to yogurt?)

Ehlers-Danlos Syndrome! That’s the one. See, you’re already figuring this out!

We’ll just call it E-D-S for now. 

So, I know what you’re thinking. “What do I do? I want a new friend! But a friend with a chronic illness? I’ve never had a friend with a chronic illness! They have to use a cane to walk around! But why are they in a wheelchair in that one picture? And they posted about all these symptoms they have!  What colour t-shirt am I supposed to wear? Wait, they just called themselves… *looks around quickly* “disabled”Can they say that?… I wonder how they got it. Oh god, what if I catch it?! Can I catch it? Oh god, am I a bad person for not knowing if I can catch it or not?!?!”

Woah, okay, chill… take a deep breath…. annnd…. just…. chill.

Better? Okay, good.

I get it. This must be really hard for you. So much new information. So many questions!  

But don’t worry. You will get through this.

And I know you will get through this because, as hard as it may be to believe, I was once where you are. That’s right, I was once a person who didn’t have any friends with a chronic illness or a disability. 

*pause for disbelieving gasps* 

I know! You could hardly tell by looking at me, right? But it’s true! 

So there’s hope for you yet! And by following these quick, easy steps, you will be on the road to chronically ill friendship in no time!

Because, here’s the thing. There’s a– Wait, can I trust you? Because this is, like, super confidential information. And it isn’t the sort of thing I go around telling any old chud about. Are you, y’know, ‘cool’?

Okay, good. Like I was saying —

There’s a secret to snagging and keeping a friend who is chronically ill. It’s a simple secret, but it’s also completely mind-blowing. The sort of thing those hotshot corporate types over at ‘Big Friendship’ will do everything in their power to stop from getting out. But I’m not going to let that stop me from telling the truth!  

Are you ready for this red hot slice of knowledge?

Here it is…

The secret to being a good friend to someone with a chronic illness or disability:

Be a good friend.

That’s it. 

Be. A. Good. Friend.

Is your mind thoroughly blown?

What do you mean, “No?” What do you mean, “That doesn’t make any sense, and give me back my money!”?

Alright, fine. Maybe I’m not explaining it right. 

Okay, let’s start with the assumption that you have at least one or two non-disabled, non-chronically ill friends. And let’s assume you have what one might describe as a healthy, functional relationship with these friends. 

Still with me? 

Now I want you to picture the things you do with these friends… The way you talk to them… The way you hang out with them… The way you go places together…  How at one moment you could be making fun of them until you’re both in fits of laughter, and then two seconds later, you’re telling them something devastating and they are immediately there for you. 

So imagine, if you will, doing all those things. But, instead of doing them with your boring old non-disabled friends, in this case, the friend you’re doing it with just happens to have a chronic illness. Maybe they’re using a cane when you go for a walk. Or wearing leg braces and using their wheelchair at a restaurant. Or maybe they have no visible signs of a physical disability on this particular day, but they tell you they have severe muscle fatigue that gives their body the same structural integrity as a bean bag chair, so you hang out on the couch watching TV and reschedule other plans for when they don’t have a case of bean-bag-body. 

See! Nothing to it! Take that, corporate hotshots with your multi-million dollar friendship marketing campaigns and team of soulless friendology researchers! We shall not bend the knee to your rigid and archaic standa–

What do you mean you still don’t get it? Okay, clearly you still have questions. That’s fine. It’s normal. *takes a deep breath* Totally normal. 

How about this! Let’s do a lightning round. Just rapidfire all your questions, and I’ll go full, Matrix-level Keanue Reeves. Bring it on!

“What the hell is EDS? Do I need to listen to Skrillex?”

That’s EDM. This is EDS. Ehlers-Danlos Syndrome. It messes with connective tissue in your body. Ligaments, tendons, all the bits and strings and straps that help hold things in place. Except they don’t do their job properly all the time, and joints can pop out of place way easier. It can also cause muscle fatigue, and affects organs, blood vessels, all sorts of fun stuff. 

“What do I call them?”

Their name. Knowing someone’s name is like friendship 101. If they refuse to tell you their name, it’s probably a bad sign. But, if nothing else works, just call them Kevin.

“No, you ass. They have some disease and it causes a bunch of physical problems. I’ve heard them say ‘disabled’, but I thought that was bad?”

For sure, the word ‘disabled’ has a complicated history and has definitely been used in many demeaning and negative ways. But a large part of the disability community has taken back ownership of it. It’s a fine word to use.

So, the short answer is call them what they call themselves. If your potential friend self-identifies as ‘disabled’ or ‘physically disabled’ or ‘living with a disability,’ go with that. Some prefer ‘people first,’ as in “My friend Becky who has a disability.” Others prefer “My disabled friend Becky.” Others might prefer something else I’m not thinking about right now because I’m not an expert and I don’t have my own lived experience.

As for the chronically ill part, I don’t know what medical experts would say about it, but ‘chronic illness’ and ‘chronic disease’ are often used interchangeably. 

“What if I say the wrong thing?”

Apologize. Ask someone (like your friend) or google the right thing to say, and use that the next time around.

“Why are they using a wheelchair if they can walk?”

Because some days walking is harder than others, and some days legs work better than others. Does your body work exactly as well as it ever has from one day to another? Bodies are weird and inconsistent at the best of times. Trying to predict which symptoms of EDS will be worse from day to day is like trying to predict how many raisins or peanuts will be in a random handful of trail mix.

“What if I want to go to a new restaurant [or some other place] but there are a bunch of stairs [or other potential physical barrier]? Is it rude to invite them?”

You’ve got two things to consider. Physical ability and accessibility. For the first, let them be the judge of it. You don’t have to exclude them from an invite because you think they will have a physical barrier. Maybe they have a week where their legs are cooperating, and they decide they can handle the stairs to try the new resto. Maybe on a different week, they have chronic pudding legs, so stairs are their nemesis. So, then you have to consider if the restaurant has a ramp, or an elevator, or an alternate accessible entrance. Or maybe you go to a different resto with this friend that you know is accessible, or do take-out with them. 

Think about it this way: You have a friend who has a fish allergy. You might not automatically exclude them from an invitation to eat at a seafood restaurant, but you will probably want to check with them first to see how serious the allergy is, if it’s only problematic when they eat fish, or if it’s an airborne allergy. Maybe you can pop online to look at the menu or call ahead to see if the restaurant has any fish-less meals or can guarantee there’s no cross-contamination between seafood and non-seafood dishes. 

“What do I tell people?”

Tell them, “This is my friend, Kevin. That’s not his real name, but he refuses to tell me his real name. So, Kevin it is.” 

Ohhhh, you meant to say, “What do I tell people about why my friend is in a wheelchair or why they post pics hooked up to hospital equipment on the regular?”

Well, what would you say to someone about any other friend’s personal and possibly sensitive situation? Depends on who these people are, why you’re telling them, what they’re asking, why they’re asking it, and the tone of the conversation. If the people you’re talking to seem overly focused on the fact your friend has a disability or uses a wheelchair, maybe that says more about them than your friend. And even if someone is asking something with good, earnest intentions, it may be none of their business, or they may use outdated, insensitive terminology. 

But if you do feel like the question is coming from an honest place and isn’t needlessly intrusive, keep the answer simple. They have a chronic illness called EDS. It messes with their joints and muscles. Sometimes they need a wheelchair, sometimes they use a cane, and sometimes they have to go to a dozen appointments with a dozen different doctors and specialists in the run of a couple of weeks.

Beyond that, you’ll have to use your own judgement and respect your friend’s boundaries and privacy. If all else fails, I’m sure you can respond with a sassy “None of yo’ damn business, honey!” gif featuring a prominent drag queen. 

That’s it? No more questions? Really?

Okay, great! See, that wasn’t so hard! And now you know the secret to being friends with someone with a disability or chronic illness. 

So let’s recap. What did we learn today? 

That’s right! Skrillex has EDS!

Wait, no! That’s not what I said! Come back here!  

Oh god, I’m gonna get sued.

– Jonny Hodder

Image Description: Lisa and Jonny hanging out at an arcade in the before times when it was safe to go out in public. Lisa is sitting in her wheelchair and Jonny is standing next to her smiling because he feels so lucky to have such an amazing friend like Lisa.

1 Comment on So, Your Friend Has Ehlers-Danlos Syndrome…

  1. Annie
    May 14, 2020 at 1:31 pm (2 months ago)

    Oh my goodness! This is perfect. Johnny for the win!!!! Kevino for the win and Lisa!!! Guys I have lost so many friends to chronic pain , EDS, and ya know 14 other diagnosis and have also made and kept amazing ones… the things in common- they are good friends. They don’t over think it and wig themselves out by my disabilities but they think just enough to be kind. They realize that they cry too sometimes. And they laugh too sometimes. And life is hard, everyone will eventually have their own form of “wheelchair”, they just might not be stared at so much! And we always get to choose to show up. I love it I love it. Rock on people WHEELS AHEAD!

    Reply

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