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[personal profile] brightrosefox
So. Multiple friends have suggested I write something like this, because no matter how often I say it, I still get invalidated, scolded, told I shouldn't be doing it because it upsets people. And of course, it would be talking about my life, my disabilities, my personal health, in public forums.

To paraprhase a friend: "...taking someone's lived experiences as they apply to their particular disability and how it expresses itself, and saying that they can't talk about that because it will make other people feel bad, is not okay and it invalidates them to varying degrees. Different disabilities affect different people in different ways."

In other words, sometimes comparing things is bad. We are human. Humans all have problems. Each human has their own set of problems. Some humans want to talk about their personal problems in ways that other humans find annoying, upsetting, unsettling - but other humans find those ways comforting, eye-opening, powerful.

I don't know how else to say it, so I'll be blunt, and this time I am not going to pull any punches:

The things I talk about on Facebook, on LiveJournal, on social media, on public blogs, on forums, in communities... they are my experiences that I willingly share so other people with similar issues can read, understand, and share for themselves. Having medical conditions can make a person feel alone, lonely, desperate, and scared if they don't know what is happening and especially if they cannot find anyone else out there to talk to. And I don't mean doctors, therapist, and psychologists. I mean people. In person. On the internet. Somewhere. People. People willing to talk about things that make people uncomfortable. I have been told I am seeking attention, that I am secretly crying out for help, that I am making it all up, that I am strutting myself around like a peacock. And to that, I say, fuck you. Simple. Anyone who really thinks that way has no business telling me what I should be doing, writing or talking about.

Being an advocate means actively discussing issues, drawing people out of their shells and into conversations. Do I talk too much? Damn right I do. Because it's my life. There are those who insist that disabled people shouldn't make their lives about being disabled. That's good. You shouldn't. Despite what you read here, I don't make my life about Being Disabled. I talk about things in my life. Guess what often happens in my life? Did you guess health problems? Good guess! You get a gold star. And if you still don't believe me, that is not my problem anymore. I'm still going to talk.
I will talk about how it feels to have a seizure, and then I will talk about the silly things my cats did, and then I might talk about a depressive episode, and then I might talk about my favorite television show. I might discuss medicine in some form - I balance pharmaceuticals with holistics. And oh, the comments I've gotten about that could fill a book. Prescription drugs are poison! Herbal supplements never work! Don't waste your money! Just think positive! Exercise more! Eat more organic foods! Don't eat any dairy! Go gluten-free! Eat more tofu! This one single plant or fruit or chemical can cure all your ills! Do this, don't do that, I am going to compare you to me and every other sick person I know because you're Doing It Wrong.
Doesn't it make you want to scream? It makes me want to scream.

I've been asked to eventually write some sort of memoir. Maybe I will one day. For now, I am writing snippets and pieces here and there. I used to be extremely shy, defensive, upset, and panicked if someone started telling me what I should do about my illnesses, my disabilities, my life. I would actually toss and turn at night because such comments seriously upset me. I realize that that attitude has gotten me nowhere. Why should I be upset? Why was I making myself so anxious? My life is amazing. My health is fantastic. I'm disabled - big whoop. I talk about it - so what?
I have helped dozens of people understand their disabilities, mental illnesses, medical issues; I've even saved a life or two. That isn't bragging. People want to talk to me. People want to read what I write.
I'm never going to apologize again for talking about something that might make someone uncomfortable or upset. And if someone really has a serious issue with me, they can talk to me personally and privately. Like I said, I'm tired of pulling punches. Tell me you think I whine and bitch too much. Tell me you think I shouldn't talk about my medical problems in public. I'm not going to censor anyone. What I will do is reevaluate how I, personally, react to and act upon such comments. So I may not react, act, or reply. I may just let it hang there. Maybe I'll make a smiley face and say "Yes, you are absolutely correct. Thank you for bringing that perspective in! I had not considered this. I sincerely appreciate your feedback." Because right now, the last thing I want to do is feel defensive, angry, offended, or actively upset just because someone had an opinion on my blog.

However, there is one thing I will not tolerate: Trying to compare my disorders and illnesses to other people in a harsh or negative way. Do you want to discuss someone with similar issues? Go for it. But don't play the Suffering Olympics with me. I have deep respect for everyone, particularly those who have gone through hard times and those who are going through hard times. It is a very very bad idea to invalidate me by bringing up other disabled or chronically ill people just to tell me how much worse they have it. In fact, such comments will be deleted. See? In the past I might have cringed and whimpered and struggled to defend myself. Nope. I'm tired of doing that. I'm tired of all of this.
I am me. You are you. Go live your life. I'm living mine.

Also, on the lighter side, I love poking fun at my own disabilities in general, and any symptoms that come up.
If you can't fight it, poke at it and laugh until you feel better. Or maybe that's just me. Feeling unwell? Body or brain parts not working? Argue with them, swear at them, hold conversations with yourself about how ridiculous life is. Laughter is pretty good medicine most of the time, especially mixed with other medicines.


And now, to quote another friend, if all this blunt stuff hasn't hit home yet:

Talking about this stuff is what I DO, because sometimes that's all I CAN do. I don't do it because I need help I am not getting (although I do), I do it because IT HELPS ME, and it helps other people. I've saved at least one life. I don't bring that up to make myself look good, I am bringing it up to point out that there's a chain here. I was saved in no small part by people willing to talk about it, share their experiences, good and bad, so that I knew what the lay of the land was. I had some signposts and bits of a map. I knew that what I was feeling was normal, even if it was scary as hell. I knew I was not alone. I knew that things would change and pass. And I provide that same talking-about now, as best I can, because that's what helped ME. And it's helped another person stay on the right side of the statistics. A whole human being . . . a unique and individual life, a human soul, because I was willing to talk about this shit when so many people are either unwilling or, for whatever reason, simply cannot talk about it. So yeah, it's kind of a big deal, talking about it. Sometimes stuff like this is more helpful than any other thing you can possibly do, because it helps other people come to terms with their stuff, lets them see they aren't alone, and, if they aren't as good with words, or have no practice articulating what are often very complex feelings, you are helping them find their own voice. Not talking about it only leaves people alone in the dark. That hurts me inside just thinking about it. Nobody should be alone with this. Nobody.
What you do, talking about your issues, has helped me learn about issues I previously had no experience with. This particular thing is TREMENDOUSLY helpful, the kind of care-and-feeding-of type thing that makes it so much easier to help other people when they need it. Thank you for posting it. Don't let other people missing the point completely ever put you off from doing this.

Date: 2013-06-08 10:49 pm (UTC)
From: [identity profile] alumiere.livejournal.com
I read all your posts and find them fascinating. But I rarely comment because I don't understand; my broken shares a few names with your disabilities, but I process in a totally different way, and I don't have epilepsy or the disociation you seem to get with it.

Thank you for sharing with us though - sometimes I get bits of clues about fibro which I take to my doctor. And adding Soma because you talked about it has helped.

Date: 2013-06-09 01:38 am (UTC)
From: [identity profile] el-esteleth.livejournal.com
Your posts about what you experience have been tremendously helpful to me, helping me find words for things that I previously had no way of articulating. It has also given me the opportunity to learn about things that I don't experience, or learn how other people experience things who have some of the same disabilities. Reading your things is very helpful for me, and I've gotten to know new people through it, as well. One of the things I think is that it's important to be able to talk about things, because then the ignorance about things gets defeated.

I agree with you about the Suffering Olympics. That's one thing I have a hard time with IRL. The majority of people try to one up each other if someone is having a rough day of it, no matter what that rough day is. I think that doing that just invalidates people, their experiences, their feelings, and for me it ends up being really hurtful.

So I just wanted to say thank you for sharing the way you do. It really helps me. :)

Date: 2013-06-12 10:51 am (UTC)
From: [identity profile] natalief.livejournal.com
*nods* Yes. This. *hugs*

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