Wednesday, 5 August 2015

Spoonie Struggle: Explaining my Disability to Others



How do you do it?
How do you tell someone that you're disabled?
Is it as easy as just blurting it out?
Do you not bother?
Do you go into detail?

I used to avoid it, I never said I was disabled, I didn't identify as a disabled person; I was (and am) disabled but if I admitted it to other people, I was admitting it to myself and I didn't want to do that. If I avoided it long enough, my health would miraculously get better, wouldn't it?

Talking about my condition used to be such a struggle, at the beginning I didn't really understand it so how could I tell someone else? I used to say, 'I'm in pain, a lot' or 'I just dislocate.' JUST? Just dislocate; as if that's something normal and everyone does it...but to me that is what I consider normal, I've been disabled longer than I've been 'healthy' so pain and popping joints are an everyday occurrence.

With an invisible illness, some days can be better than others, if you meet someone new on a good day, how do you tell them that these 'good days' don't happen that often? To be perfectly honest, I didn't say anything. If I was having a bad day and had to cancel plans, I'd say I wasn't feeling well, I didn't go into detail, I didn't mention my knee had dislocated and my back was going into spasm leaving me incapable of moving. It was too difficult. It was too hard to let people know that I was different, that I had limitations and my body broke sometimes.

As relationships failed, friends dwindled, I learnt to listen to my body a bit better and I realised that I wasn't doing myself any favours by pretending. I realised that I was living behind a mask and I wasn't making connections because I didn't accept myself. I needed to get over my fear of being different and acknowledge that I had a disability.

I do now. I talk openly about my conditions and when I meet new people I'll gladly answer any questions they have; as long as they're not being rude or judgemental, if they are, my boyfriend deals with it. I still feel awkward when someone asks me about my occupation, especially if I'm not using my wheelchair or they've not seen my crutches but that's my obstacle to overcome and it leads to a conversation about my health, which I'm totally fine talking about (now). I'm quite a chatterbox so if questions are too probing or I don't particularly want to go into a lot of detail I can easily divert the topic.

My name is Sarah and I'm disabled. My disability doesn't define me, it has shaped me in many ways and I'm much stronger because of it but it is not who I am.

How do you discuss difficult personal topics?



8 comments:

  1. Wow - you're very brave to have gotten so far with chronic illness and being able to talk about it opening. It's like anything it just takes time.

    Good luck on the rest of your jounrney!

    Rach // illustratedteacup.com

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  2. A brilliant post, Sarah. I try to think people of our generation are beginning to understand invisible illnesses a bit more than previous but there is always going to be that one person who asks the awkward questions or puts us in certain situations.
    You are a strong woman and you got this, girl.

    Gillian xx EyelinerFlicks

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    1. Thank you my sweetness. It's a touchy subject but I'm getting much better at talking about it. I totally have this ;) x

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  3. Beautifully written Sarah. I don't like to accept my limitations or acknowledge them to myself or anyone else. I'm also the same in that, when I'm having a bad day, I'm not vocal about it. I just get on & do things the best I can. I've found this can lead to people thinking you're better than you are, but that is my coping mechanism for dealing with the pain - pretend as much as I can that it doesn't exist & maybe it will go away!
    You're an amazing woman that I am so glad to be able to call a friend. Xx

    Tania | whentaniatalks.com

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    1. Thank you, Tania, that was so lovely to read. I'm happy to call you a friend too MWAH! I used to be exactly the same, but pushing through and pretending the pain isn't there isn't any good for our body.I hope you can accept it soon :) I will teach you my ways lol x

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  4. Another great post :) Talking openly about my mental and physical health is something I still really struggle with. In 2015, I talked more openly to my closest friends about it but talking to other people I know, even my family, is still a huge obstacle for me. I find it difficult to answer the questions of some of my friends when they message me for a catch up, especially when they say things like 'you feeling any better yet?'. :/ it's really frustrating sometimes.

    This year, I'm going to be more open about my health and see what happens, but I still worry about receiving judgemental comments or having awkward conversations which leave me feeling like I'm being interrogated.

    www.raiin-monkey.blogspot.com

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    1. Good luck with that, I hope you manage to get there. I'm still very taken back with certain questions, it's so difficult x

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