• Emily Ainscough

Being Proud

TW: References to symptoms of FND.


This is a story about how a shit date helped me learn to be proud of my condition.

For a long time I never really understood 'pride' in terms of my disability, Functional Neurological Disorder has been a horrid, grueling addition to my human experience and the idea that anything positive could be associated with it felt like it undermined how difficult my struggle has been. (It made me angry when people said things like 'it's a gift' because if it was then give me the fucking receipt because I want to exchange it for store credit). It's not like I was ashamed of it (I mean, there is always some irrational internalized shame with these things and I'm on a journey with that, but that's a separate thing I'll discuss another time) but 'pride' just seemed like a pretty weird thing to feel. I mean, it's not a Duke of Edinburgh award, people aren't walking round with their arms in casts feeling proud of their broken bones, they don't sell tote bags or bumper stickers saying "My daughter has FND!"

...but maybe they should.

So, this date, let's call him 'Ron', well, he was nothing like his profile in real life. He wasn't a catfish, the pictures were definitely of him, they just weren't an accurate representation. All the photos had been carefully selected through unusual angles and tilts to make him look very different to how he did in real life. He was selling himself as a broad shouldered, big bear body-type when in reality he was a petite guy with more delicate features who was a lot shorter than what he claimed on his profile. I don't blame him, society has been telling us that one type of body and one type of personality are sexy and that we should all strive to be that. (Yeah, even his personality had been through the insta-filter on his profile, when we sat down to dinner and I got to know him, the things he had written online really weren't representative of him at all). What broke my heart is that he is a wonderful, sexy, brilliant man that so many people out there will find attractive, but obviously not me! He has made sure that the people he meet won't be the people who are attracted to him because the people swiping right on him are the people attracted to those bear-bodied outdoorsy types and all the people who would be totally enamored with him will be swiping left because they can't see him in his profile! He has shot himself in the foot and is now walking around in circles because of it, going on date after date after date with the wrong women, reinforcing his belief that who he is is the problem.

Then I went home and I realized how sometimes I too have been doing the same thing. You all know that it took me a long time to write on my profile that I have a disability, that step was huge, but it wasn't enough and it isn't the end. It's not enough to mention it once when still the stories I'm telling on first dates are from before I got my condition. It's not enough when I'm still acting like I'm just on a little break from working full time and list projects from years ago now as my biggest accomplishments. I'm still selling myself as 19 year old Emi, cosmopolitan career woman, and yeah - she was great! But so am I.

Of course it's okay to tell anecdotes from 'before', and be proud of that young woman 'then', but I need to stop selling myself short. My big accomplishments are not from four years ago (well sure, some of them are), but my biggest accomplishment is being who I am in the face of this condition. A big part of my life is seizures and physio and managing pain and they are big fucking challenges that I am acing like an absolute BOSS!

When Ron hid his nerdiness and his delicate frame and features, he was telling the world and himself that he didn't believe he was loveable, and when I hide the reality of my condition I am doing the same thing. Well, to all the Rons out there, your passion for computers and maths, your PhD and your beautiful body are all so incredibly worthy of attention, somebody out there thinks your exact combination of body and personality is the sexiest thing on the fucking planet! You are a sexy man! And as soon as you realize it, you'll open yourself up to the attraction of women who think you are too.

My FND is better than a Duke of Edinburgh, I'm going to put my diagnosis in a frame in my living room because I am proud of who I am and what I am going through on a daily basis. I am learning so much about myself and about the world and I am doing my best under very difficult circumstances... that really is something to be proud of. Now it's time to open the flood-gates to some wonderful dates, because I deserve them. Somebody is going to see me blossom and thrive despite all these challenges, walking with muscle cramps and facial tics down the high-street slower than a snail with a smile on my face, and they're gonna say dayyyyyyum girl, that's the hottest thing I've ever seen.



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