This is a particularly difficult post to write, and I actually just sat here staring at the screen for a long while not typing anything at all. I was talking to Master Pravus about how this blog post had been forming in my head for quite some time, and he told me that “those are the best posts.” You know, the ones you agonize over, and you aren’t even 100% sure if you’re ever going to put fingers to keyboard or not.
In the past year or so, I was diagnosed with Ehlers-Danlos Syndrome, which explains a lot of the problems I have had my entire life, and having a name for those problems is really nice. It’s good to be able to finally have a name for what is wrong with me, and to be able to say “Well, I know what’s wrong, now how do I go about living the best way I can?” I know there is no cure, but there are absolutely things you can do for yourself that will make your stay in your hypermobile, fragile body better. There are things your doctor can do to help. There are things the people in your life can do to help. There is always something that can be done.
For those of you who don’t know, Ehlers-Danlos Patients have sort of adopted the zebra as their mascot. Why? Here you go. Now, I completely understand the analogy and I think it’s kind of a cute symbol. The problem I have in general, is that, people take the analogy too far. EDS patients tell each other to “Fight like a zebra!” They point out that being a zebra makes you special. I guess I understand where most of those people are coming from, and that is completely fine if that works for you (I’m not trying to put down the way that anyone goes about fighting their illness), but that doesn’t work for me.
Why don’t I want to be called a “zebra?” Well first of all, zebras are herbivores who subsist on grasses and are mainly prayed upon by bigger, hungrier animals. I’m sorry, but if I fight like a zebra, I am literally going to die. I’d rather fight like a tiger or a bear. I’d rather grab the bull by the horns and fight for my motherfucking life! I just feel that, using the zebra in a way that compares me to other sick people puts me in a group where we’re all victims and we’re all going to just have to lay back and accept our illness and die quietly. No thank you.
The other thing about being classified as a “zebra” in the Ehlers-Danlos sense, is the fact that many people with the illness point out that you are “special” because you have this completely rare disease that most other people don’t have. That’s true, I get it. You are singled out because you are different. But, I see that as being different for the wrong reasons. Yes, the Ehlers-Danlos is a part of me, and yes it is something I will have to deal with for the rest of my life, but there are so many other things about me which do make me special in a positive way. For example, I’m a good seamstress, and I write poetry, I’m good at following orders and I’m stubborn, and determined, and I can sit in bondage for ungodly amounts of time without wanting or needing a break. When I die someday, as we all do, I want people to remember the bits about me that were actually special in a positive way, not just some illness that I was afflicted with.
Am I one of those people who never whines? No. I’m pretty sure when I die no one will ever say that I was one of those people who “suffered silently”. You know what? When I am depressed because I have to miss out on something I badly wanted to do because of my EDS, yes, I am going to whine. I have an open heart and I don’t tend to keep things like that bottled up. I am a firm believer that you shouldn’t have to hide the awful bits of your life, and share only the good. That is just lying to yourself and lying to other people. Do I bitch and moan every single day of my life? No. I don’t do that either. Most of the time when I am dealing with some bullshit part of this illness, I just keep it to myself. I know how to deal, and I just tape myself, or rest, or do an Epsom salt soak and keep going. As I said before, there is always something that you can do, even if it doesn’t fix the problem at hand 100%. You can absolutely improve your condition, even minutely, and I refuse to be one of those people who just passively lets this condition eat me away. I have a life, and I’m going to live it, damn it! And yes, sometimes that includes taking breaks here and there, because that’s just the way shit goes.
The thing which spurred my writing this post is that, well, since posting about being diagnosed with EDS, I have had all sorts of people approach me wanting to be my friend on the basis of the fact that we’re both sick. I do have friends with EDS, but I can’t be friends with someone who has EDS on the basis of illness alone. We have to have a lot more in common than that, because to be honest, if we don’t we’re going to just bitch and moan about the illness and never talk about anything else. That is boring and unproductive to me. It’s not that I don’t want to be supportive towards other people who have EDS. I do! It’s just that, if our illness is the only thing we have in common, I just can’t. It’s not you, and I’m not trying to hurt your feelings. I need friends who are supportive, but who have other things that we can talk about. I don’t sit there and dwell on this issue or that each day, and I don’t think that’s healthy for anyone. The kind of friendships I have with people who have EDS that actually work for me, are with people who have things in common with me (such as kink, or movies, etc), and we can talk about those other things more often than not, and when need be, we do vent about EDS. I know a lot of people feel like they have made many friends due to their diagnosis, but I don’t want to be that person. I want to be the person who lives with (and does their best with) EDS, not the person whose entire identity revolves around being sick.
I just had to get all of that out of my head. I hope I didn’t hurt anyone’s feelings. Please understand, if you call yourself a “zebra” I am not judging you. That just doesn’t work for me, and I do take offense when people refer to me as a zebra.
I’m Faete. I live with my Master, we are in a 24/7 power exchange dynamic, and we love hiking, conventions, bootblacking, snuggles, pony play, spankings, bondage, Harry Potter, swimming, video games, blood play, skull fuckies, Lord of the Rings, and all sorts of fun stuff. Oh, and by the way, I live with a chronic incurable condition called EDS, which means my body’s glue doesn’t work right and I deal with myriad problems because of it. Oh, I’m being rude, you haven’t got a drink! I’m such a bad hostess, would you like some tea?