Rolling Without Limits

Your mobility may be limited. Your voice, boundless.

Coming Out the Closet...
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Coming Out the Closet...

The disability closet, that is. I saw a post on Reddit that prompted me to write this. How many of you have ‘come out’ to your friends and family about your disability? How did you do it, was it your choice?

My health has slowly degraded (although more rapidly than I’d like). Eight months ago I was working 13 days a fortnight, then I went to using a cane, to now needing a wheelchair for ‘longer’ trips like shopping (anything more than a few hundred meters). My family knows, my partner obviously knows, and about 5 of my friends know. I have about 200 friends on Facebook and yet I still can’t bear to do a post about anything to do with my wheelchair.

I won’t go into certain shops if I suspect someone I know is in there. And it’s not even shame so much as simply… Not wanting them to see me like this. Sure I am afraid of judgement, after all you can’t please everyone, and I am still an active horse rider (bless them for having stronger legs than I) which leads to a great deal of misunderstanding. But this whole process has been one of mourning my previous life, and moving onto a new life, with different challenges, and different ways of achieving things.

I’m so excited that in the last couple of days, I have taught myself how to do wheelies and go over small obstacles, but I feel I can’t share that as openly on Facebook as I can my horse-related achievements. There’s such a vast difference between the two- one may be looked upon with admiration, the other with pity. One with awe, the other with confusion. One with confidence, the other with so many questions. One with understanding, the other with judgement. It’s the difference between who I have always been, and who I am now, and it’s a bridge I am not sure how to cross- at least not publicly.

Of course, having chronic pain (or any other invisible illness) sure brings out the best and worst in people, and you truly learn who your real friends are. Part of me feels I should give them the benefit of the doubt, the other part feels fear of continued loss. So I want to know… How did you come out of the disability closet? How did your loved ones react, how did your acquaintances react? Did you lose friends, gain friends?

(I wanted to get a photo of myself, my wheelchair and my horse for this blog, but didn’t want to attract attention where I keep my horse either! Maybe one day soon?)

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  1. Rolling Without Limits Support
    Rolling Without Limits Support
    Thank you for blogging again! You are a valued member of the Rolling Without Limits community. We're rooting for you :)
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  2. Joe Genera
    Perhaps it is time to 'come out' to anyone and everyone. While, after 33 years of wheelchair use, I understand your feelings, the old axiom holds true. Your true friends like/love the real you. If they feel differently about you upon learning you're disabled, what is their true worth as a friend? It would be very freeing for you as well, not having to worry about who sees you where. And the truly enlightened will always see Segreto first, your disability second, if at all. Very best wishes to you and your future - be well!
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  3. lambwaffle
    I completely understand your dilemma. I had that issue with my family. Of course not my immediate family but long distance family had a hard time soaking in how weak my heart is I can't walk, the circulation problem alone I faint at times or have a seizure. I didn't look sick enough on facebook. In that moment I felt like, your damned either way. If I hid it, well I'm a faker when they see me in a wheelchair. I'm so young how can possible have such severe heart failure. Then the other side of it, well if I post that photo of myself not hiding anything well I must be looking for pity then? As far as being so severely ill I didn't hide the fact on facebook. I couldn't, seeing as that was how extended family keep updated on my condition, but post a photo looking normal ... OH you must be cured or your a faker. It seems they expected only hospital photos to be posted and nothing else. Am I not allowed to try to have a life? How to balance that fine line, I still don't know. Thankfully I don't really post anything anymore on Facebook simply because I'm too exhausted to be social and I have nothing positive to post about my condition. I haven't been able to work on my art for a while now due to my joints and fatigue so I have no new work to post so I just let my account sit. I'll do a status to let them know I'm alive lol but I guess in my case I was screwed either way so I just gave up. Now using a wheelchair? Hmm I don't hide the fact but I simply omit it. Mostly because people will ask, "but you can walk can't you?" I can't help but feel that quiet judgement or being labeled lazy. Even at home, I try not to use my wheelchair even if it means a night of pain due to joints and circulation. I have this stubbornness I can't let go of, of being secretly judged for using a wheelchair while my legs "technically" work. I wouldn't dare judge another for anything but sadly I've heard enough people shrug off comments at Wal-mart, "oh look at them get out of that wheelchair, they can walk! How lazy...." Or the oh so ignorant " They are too young to use a wheelchair., you just know they can walk fine." I can't help but imagine those hurtful whispers behind my back when I'm in public in my wheelchair. Unexpectly I did run into a dear old friend of mine while needing an ultrasound of an artery to my heart. There was no hiding anything. She happened to be the tech administering the exam, and I happened to have a seizure on the table. It took a while for me to be coherent but I don't think I'll forget the way she looked at me as my husband pushed me in my wheelchair after it was all over. It was a familiar look I'd seen on my families face. Its the look that tells you just how different you really are to the person you use to be. They will never look at you the same ever again. Oh it's meant to be hurtful, no's not pity either. It's almost as if you get a glimpse of how fragile you really are, at least in my case it was. It's like watching someone see you with new eyes, and you realize just how much you've changed. That's the word. CHANGED. Yes, my life is greatly different now. My personality has even altered, along with the exterior. I dress for comfort now not style. I even had some inches cut off my hair after a seizure left it so badly tangled there was no other choice. That's just it though, I never thought of it as changed but adapt. Adapt to my new challenges in life but essentially I'm still me. Until you see people look at you in that new light you start to wonder, am I me anymore? I'm not so sure when what makes me special, (to myself that is ) I can't do anymore due to health...I guess all we can do is keep doing what makes us happy for as long as we can and try our best not to worry about the rest. Then again it's easier to give advice than follow it lol.
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