Oof, this is a tough one. Mostly because you can't see most of it. In general, I like to think I'm pretty open about discussing my condition, at least online. I'm alright at explaining symptoms and giving updates. But if I were to say something, to make the invisible visible, every time there was something wrong, it would be exhausting for everyone (myself included). It's not that there's a lot I don't tell you. It's just that there's a lot I don't bring up very often. I get tired of talking about my health all the time. I can see people getting bored or annoyed, or not believing me, if I do it too much. So I just don't. Which is pretty much what every person with a chronic illness does. Young people especially.
The easiest thing to talk about is the amount of effort it takes to accomplish . What you can see here is someone why put on a full face of makeup, put on a dress she dyed herself, and took a stunning-if-I-do-say-so-myself picture. What you can't see is that this process took about 4 hours (not counting dying the dress, obviously). All of that makeup was applied with my hands because my tremor is so bad that using actual tools is impossible most of the time. I took a dozen pictures in order to get a clear one because, again, tremor. I had to sit down after every couple to minimize the dizziness. My photo taking hand kept going numb. A small pile of makeup products stayed on my floor for several days afterward because I just didn't have the energy to pick them up. I slept until noon the next day because putting on makeup, taking pictures, taking off makeup, and figuring out which to show people was so exhausting.
One of the main symptoms of EDS- all types of EDS, but hEDS especially- is pain. Something on my body hurts literally all the time. I am never not in pain. This is not an exaggeration. It has been like this for as long as I can remember. The first hEDS symptoms I can remember began when I was 6 or 7, and they were painful. My ankles used to give out when I was walking, and if we were in line at school I was made to keep going instead of stopping to see if something was wrong. See, it happened a lot. With no cause; no one was kicking me, I wasn't tripping over anything, we weren't playing sports. And then the problem magically fixed itself every time. So the assumption was that I was faking it. Or if I want to be generous to some of the adults around, they thought it must not be that bad and I was overreacting. Those are some of my earliest memories.
I do not know what it is like to not be in pain. A lot of times, people with longterm chronic pain lose the outward expression of pain, their tolerance for pain rises, and/or the way they interpret pain altogether gets muddled up in their brains. Feeling a high level of pain over an extended period of time isn't sustainable physically, mentally, or emotionally. So when you're in pain for a long time, your brain goes into protective mode and that level of pain you're experiencing just becomes your new normal. This is an experience that can build over time. You can learn to withstand higher levels of pain for longer amounts of time. It doesn't mean you stop feeling it. It's always there. It's just that you can still function while in pain.
That can make things like emergency department visits tricky. The 0-10 pain scale, for example, is useless to me. I mean, it's not a great metric anyway, but I can't come up with a better one, so who am I to judge. But I don't have a level 0. I have no concept of what that feels like. And I know that my level 5 is probably someone else's level 8. So I find myself just guessing at whatever I think will get me the appropriate amount of treatment at the time (a common activity for people with chronic illnesses who have to go to the ED). The descriptions of what the numbers can mean don't help either. "Worst pain you've ever felt"? I don't know, worst acute pain or worst sustained pain? Worst pain or worst pain that was something serious? "A level 8 would be like being attacked by a bear." ...who the fuck has a frame of reference for what that feels like? You're just trying to get people to not pick level 8. "A level 10 would be like getting teeth pulled without novocaine." Look, I didn't know I was resistant to novocaine until my mid 20s, so all of my extensive dental and orthodontic work was done without the benefit of novocaine. All of it. That is not my level 10. What do you want from me? Speaking of "what you don't see," there's the issue of performing pain for the ED staff. If you say you're at an 8, but you're not writhing and making involuntary noises, you are not believed. I, like many people with longterm chronic pain, can feel something at an 8 with hardly any expression at all. We can carry on a conversation, we can tell you exactly what hurts, we dan describe things in medical detail. We might not be friendly about it, but we can do it. Because that's the level of pain we have to deal with every day sometimes. But unless we put on a show for the medical staff and fake what they think and 8 is supposed to look like, we're labeled drug seekers or just flat out liars. We're not making it up, we're not exaggerating, we're not looking for drugs. We just have a lot of practice functioning while being in pain.
Let's talk about something else you don't see.
Meds! This is what I take in a day, minus any as-neededs (there are 11 of those, with 1-4 units at a time, 1-3 doses a day). Better living through chemistry. I know some people have a hard time coming to terms with needing to take a medication for the rest of their life, or even for an extended period of time. Luckily, I am not one of those people. Possibly it's because I've been on one of them since I was 16? I don't remember that time in my life very well, so maybe there was an adjustment period then and I just don't remember it. Either way, it's preferable to feeling less-than because I need to put some extra chemicals into my body to live. Drugs are good. Do drugs, kids. No wait, that's not what I meant.
If you go to the Gallery page of my site, you'll see a bunch of photos of various shows and jobs. What you won't see are all of the jobs I've had to give up. All of the shows I couldn't audition for, the career I had to give up, the education I had to leave behind. We'll get into it more next week when we talk about mental health, but there's a lot of unseen grief that goes along with chronic illness.
Overall, there's most that you don't see than what you do see. And that's okay. Hopefully reading this made some of the invisible stuff that we deal with every day a just a little more visible.