Late last year I was in the process of photographing Conker Magazine's cover image for their Growing Pains issue. We were shooting 3 fabulous and confident models, all of which had gone through their own experiences to get where they were that day. I was off to the side waiting for the make-up artist to send me someone to shoot and Shankar Jalota came to have a chat whilst he had some free time. Shankar has vitiligo and we were discussing our different conditions and how they have affected our lives so far. Both of us were pretty new to our symptoms and so we could relate to one another somewhat.
After talking about how I hid my walking stick from friends and family for a considerable amount of time he asked how I felt about it now. I mentioned that I don't use it all that much now but if I have to, I see it as a necessary aid and I shouldn't be ashamed of it. He then asked would I have my life be any different if I could. I replied, of course not!
I LIED.
Being surrounded by people that felt so at home and confident with their conditions made me feel like I couldn't be the one to rain on the parade. I knew I didn't agree with what I was saying but I thought maybe I was just too new to my diagnosis. Maybe in time, I would feel the same as them. A type of fake it 'til you make it kind of situation. Since then I have processed my EDS diagnosis a little more and come to the conclusion that yes if I could have it a different way, of course, I would. Why, if I had the choice, would I choose to be in pain every day? Why would I want constant dislocations, hospital appointments, and an uncertain future? I appreciate the things my new condition has taught me in terms of compassion and perspective but it can be hell to live through.
It is quite taboo in the disabled community to say you would rather not be disabled. It is not spoken about and considered offensive but if I'm honest I would not choose to have such difficulties. I think everyone would love an easy life with little complications and a straight path. I'm not saying disability is wrong or anyone with a condition is not a valid and functional member of society but I wish they didn't have to go through pain to live. I wish that some didn't feel they had to fake positivity even when they are feeling a little low. It's a lose lose situation! If we are positive we are burying our head in the sand and not being true to ourselves and if we are negative we are wallowing. It's hard to know how you should act and the community can put huge pressure on that situation.
Luckily my disability is invisible for the most part and so I get to pick and choose who knows about what's happening to me. If I don't have the energy to explain my condition I don't have to even mention it which has helped me a huge amount. A lot of people only ask questions so they can pry into your life but when they realise what difficulties you're facing, they offer no support. I have become a lot more comfortable talking about my disability but like the opportunity to hide parts of it if needed. Unfortunately, the world can still be very discriminatory to the disabled community and sometimes I just don't have the energy to deal with that sort of attention.
I'm here to say it's ok to not feel great about your diagnosis. You're allowed to be angry and feel like it's unfair. You're allowed to need help through the bad days. You're allowed to not think in sunshine and rainbow dreams all the time. You're not as alone as you feel even though your disability can be isolating. You don't have to act like everyone else and those days where you do feel positive about yourself and your future, enjoy it!
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