I'm going to be totally honest with you here (as if I haven't been doing that all along), I don't know where to start. There's just so much. I don't even know how to organize anything I'd want to try to talk about. There's no way to pick one thing that's more important than another, there's no way to put anything in chronological order, and there's no possible way to write about every single thing.
I guess the first thing I wish you knew is that EDS is exhausting. I know it's sort of a Thing to say that being an adult means you're tired all the time, but it's not the same thing.
My fatigue is not the same as your being tired. It might be the kind of thing you can't really understand unless you've been sick, really sick, for an extended period of time. I think a lot of people have a better idea about how it feels now that they've gone through a pandemic. There's the fatigue that comes with having Covid and there's the fatigue that comes with the pandemic itself. Your brain and body have been under stress for two years, they're working overtime on keeping you safe and healthy. That kind of stress takes a toll over time, whether you notice it on a daily basis at first or not, it builds up. I've been feeling that fatigue every single day for more than a decade. I am exhausted. All of my muscles are in a constant state of spasm just trying to hold my skeleton together. And a full night's sleep hasn't been a thing since...ever? AND who the hell even knows what's happening neurologically. All of that is exhausting.
For that reason, I can often come off as unreliable or flaky. What I wish you knew is that I'm not unreliable- my body is. It may seem like an arbitrary distinction, but it doesn't feel that way to me. I don't want to cancel plans, I have to. I don't "get" to have a ton of free time because I don't have a job- I had to stop doing all of the things I loved to do because my body isn't reliable enough to satisfy an employer or be responsible for children or keep myself safe. I wish you knew that when I have to cancel something, it's because I don't have another option. It's gotten to the point that I can be pretty forgiving to myself about it, but historically I've beaten myself up A LOT. So I promise I don't need you to tell me that I'm being flaky or unreliable by canceling something. I try hard and do everything (usually too much) to in my power to follow through on commitments, professional and personal, and I give as much notice as I can. But as we've previously discussed, EDS can be unpredictable. I can be alright in the morning and in terrible shape by the afternoon. The most I can do is try.
This is hard for a lot of people to understand because "I don't look sick." That's a loaded sentence. It's often given as a compliment, like I have a day when I'm doing well enough to be around other people, or I've put special effort into my appearance, "but you don't look sick!" Sometimes it's an accusation, like I've had to back out of a commitment and someone doesn't believe I have a reason, "but you don't look sick!" Sometimes it's used as a reason to deny medical treatment, like when I have an appointment with a specialist after waiting for months for a serious problem and they won't listen to anything I say, "but you don't look sick." It's often coupled with saying that I'm too young to have the problems I do, or I look to good(?? there's a LOT to unpack there), or I was doing just fine yesterday.
Here's the thing. Are you ready? You might want to sit down for this.
I do look sick.
Because.
I am sick.
So, by definition, I look sick.
I don't know what else to tell you. Even if you mean it as a compliment, it's not. It's offensive. Please don't say this to anyone. Not "looking sick" gets in the way of treatment, diagnoses, getting and keeping disability benefits, health insurance claims, and can destroy personal and professional relationships due to ignorance. We shouldn't have to perform illness in order to get medical treatment or benefits, that's bullshit. We certainly shouldn't have to perform illness in order to get our friends and family to believe us.
Moving on.
I wish you knew that it doesn't take much to get injured or sick. EDS makes our bodies fragile. Depending on the subtype you have, it can make your joints dislocate or subluxate (partially dislocate), or you can tear your skin or organs, or get terrible bruises, all without much effort. Much like being tired vs. being fatigued, it's definitely a Thing to be like, "oh, you know you're in your 30's when you throw your back out by sneezing too hard." That makes it really easy to discount the injuries and pain that people with EDS experience. A lot of people think that they go through the same thing with standard aging. And again, it is not the same thing. I'm absolutely not invalidating the pain that people without chronic illnesses or disabilities go through as they leave their 20's. It's real, it matters, and they should be able to express it. But, for example, I knew someone who spent most of his time sitting at his computer (maybe 6-10 hours a day), never exercised in his adult life including taking walks, and ate a red meat focused diet (not knocking it, just a data point). He was convinced that since his back and hands had started to hurt, his blood pressure and heart rate were borderline high, and he'd begun to feel general aches and pains, that he had EDS. He had no history of injuries without trauma, no mysterious illnesses, no hypermobility, never had need of any medical specialists in his life, never had any dental problems, no dysautonomia, no allergies, and didn't even have a primary care doctor. I have absolutely no doubt that he was in pain and that it was difficult for him. It is not the same.
Not all of us have an immune system component, but some of us do (though it's impossible to know right now whether it comes from EDS or one of its comorbidities; the research is ongoing). I've had immune system problems since I was little and they've only gotten worse, aided by steroid use. There are other meds that limit the usefulness of my immune system as well.
I will likely be on meds that interfere with the effectiveness of my immune system for the rest of my life, in addition to being immunocompromised. EDS is a lifelong, incurable condition. I wish you knew that I'm never going to get better. I will have good days. I'll have great days! But if you see me one day and I'm sick, and then you see me the next day and I'm not quite as symptomatic, that doesn't mean I'm getting better. It means what I just said, that I'm less symptomatic. I appreciate optimism and wanting to see me well because you care. Unfortunately, that's not very helpful. It honestly just kind of makes me feel bad. Because I'm not well and I'm never going to be well. Whatever extra illnesses are piled on top of the chronic ones, when those are finally out of my system (which takes way longer than the average person, by the way), I still won't be well. The best thing to do is to steer clear of comparing how I look to the state of my health, unless you're a trusted doctor or longtime loved one. Even then it's iffy. You can still tell me I look great! That will be a much appreciated compliment! And you can still tell me you hope I feel a little better tomorrow. But anything beyond that...just find something else to say, please.
There are so, so many more things I wish you knew about EDS. These aren't even necessarily the most important things. But they're the things that came to mind first I guess, so there's something to be said for that. If you made it this far, thank you. I encourage you to scroll through the tag #MyEDSChallenge or #MyHSDChallenge on all of the various social media platforms to get a sense of what other people wish you would know. There's going to be a lot of crossover, but I bet you'll find a multitude of additions to your EDS book of knowledge if you go take a look.