Coming out as Disabled - My visible and invisible disability

Hello, hello. [DRAMATIC PIANO PLAYS] Friends... Fam... I have something very important to tell you. No, no! I have to be honest with you... [MUSIC STOPS] I'm disabled. [UPBEAT INSTRUMENTAL] That is not going to change anytime soon. So this is not something where you get to say, "I hope you get better soon", because I will not be getting better soon. If I walk with or without my cane for a few steps, it does not mean that I am "getting better", the fact that I can only walk a few steps is part of my disability. Sitting, I'm disabled.. on my cane, I'm disabled... no cane, I'm disabled. I have hypermobility, my ankles are basically jello, as are my wrists and my knees [LAUGHS] I risk dislocation whenever I push myself to take those few steps. I've decided to make this video and tell you now because .. I am in this weird in-between point of visible and invisible disability. From the outside you might think I look just fine, you might think "you don't LOOK sick" is a compliment, but it isn't. It can be difficult to believe because of how I adapt and cope, but I experience more pain than healthy people generally do. I am in pain now and constantly, I talk though it, I laugh though it, but I am still in pain. I can appear cheerful when my body is feeling stabbing pains all over. There is pain even when I am laying down, when I am sitting down... pain can be caused by a breeze. I can handle it, until I can't, until the pain increase has me screaming or in shock. I am not sick because of lack of effort and in these circumstances, pushing my limits can be not only dangerous but it is futile. I know my limits, I promise you, I push myself to do what I can every day, I don't WANT to be isolated and in pain all day, I often have things I need to get done but my illness gets in the way. It cannot POSSIBLY bother you more than it bothers me. If you would like to show your support, ask me how you can support me in that moment, it'll be different all the time. Please don't assume that the words that would make you comfortable are the same words that would make me comfortable. I'll probably have to make another one of these when I get officially diagnosed, but that's a part of it, I can't wait for a diagnosis, I am disabled RIGHT NOW, with or without a diagnosis. And asking me things like "How long are you gonna be in that chair?" are stressful and hurtful because I genuinely don't know! But the closer we get to a diagnosis, the closer it's looking like.. NEVER! And that's not the answer you wanted when you asked me that question, is it? So I'd appreciate it if those kinds of questions were no longer asked. A lot of the struggles with visibility that I face right now, particularly within my family and friends is that my type of disability is not a disbility that they are used to. It's been really hard dealing with that prejudice; that people don't know the amount of diversity that is within the disabled community. That whenever I'm out in public, when I'm using my wheelchair and I stand up for a moment, that I'm TERRIFIED of someone harassing me, or just approaching me, or judging me, thinking that I'm "faking it". When I'm not faking sick! I'm faking WELL! As much as I can, I push my limits and I smile through pain and I talk through pain, and it sucks to feel so invisible in that way sometimes. There's a dichotomy, I think, to what people think disabled and sick looks like. I'm not pale, I'm not bone thin, so I don't "look sick". But I am sick and I'm in pain. This is what disabled looks like, this is what chronically ill looks like. [SIGH] I've never been one for dichotomies. [LAUGHS] I'm always somewhere in between, I'm always playing The Fluid Game! Of course, disability would be no different. Most of the time I'm in a wheelchair, occasionally I walk, only for VERY short periods, it HAS to be very short or I collapse. But no matter what, I am disabled. I'll see you all eventually.... bye. [OUTRO MUSIC]