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Sometimes It's Exhausting To Fight, But Then I Look Back And See

Long Story Short

Like many others, my story is a long and complicated one. And so like many others, I have learned to be direct. I have been diagnosed with hEDS and CRPS. As a result, I am in and out of the hospital due to dislocations, subluxations, intense pain, and bouts of unconsciousness. I use a wheelchair whenever I leave the house and am much more careful when I am out. Also, as a result, I live life very differently from most others, and very differently from how I used to. I used to compete in martial arts - I was graded through to black belt at ten - and I was very good. I used to play Badminton, be a part of school choirs, and be out as much as possible with my friends. And that all very quickly changed, starting in 2016.

Learning That Healing Gets More Painful Before It Gets Better

In 2016, the dislocations in my right knee got worse, and I had surgery, but the surgery didn't work. And that made my depression and anxiety - which already affected me- much worse. I lost the ability to compete and train my martial art, I didn't have the energy for choirs or social outings. I lost most of my friends, and those who did stick around I pushed away. I was so focused on all the things that being disabled took away from me - my dream career as a doctor in emergency medicine, my ability to compete in martial arts, and my energy to be out and about with my friends. And it wasn't until a few years later - in fact, in 2021 - that my perspective changed. That I fought hard to change my perspective on my disability, my circumstances, and what my future could hold. And the first step was to own my situation and step out of my comfort zone.

Living Life Through Adaptation

In 2021, I decided to be more open about my disabilities. I had been using a wheelchair regularly since 2020, but no one really knew what I was dealing with, and what my life looked like. So I stepped out of my comfort zone, and I used my voice. I met other people who knew my struggles - who had CRPS, hEDS, and comorbidities - and I bonded with them. I started the Disabled Students Association at my university with two of my best friends. I fought for advocacy, support, and understanding of the disabled community at my university. And when people asked how I did what I do, I would respond "I live my life through adaptation". I educated those around me as best I could. I forgave myself for the ways I would punish myself in the past for being disabled. I let myself mourn the life I had, and the life I dreamed of, and then focused on all of the lessons that I had learned through being disabled, and all of the opportunities I have found as a result of being openly disabled.

So, What Now?

Now, I fight. It is exhausting, but I fight. I fight to complete my Bachelor of Arts in Psychology and Anthropology. I fight to continue to raise awareness and change the perspective on the disabled community at my university. I fight to raise awareness for hEDS, CRPS, and disabilities in general. I fight to get the treatment and support I need - and to retain it. I fight to support my friends when they need me, to show them, love, when they need it the most, and when they don't - because I can. I fight to focus on the positives of my life, and what I have gained. Because I am so much more than my diagnosis. I am so much more than the wheelchair I use. And I have come such a long way in my healing. And I couldn't be prouder.

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21, She/They, Bisexual, Pagan, hEDS, CRPS + more, New Zealand, @phoenixwithdislocatingwings.

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Nikita Van Dijk

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Sometimes It's Exhausting To Fight, But Then I Look Back And See

Like many others, my story is a long and complicated one. And so like many others, I have learned to be direct. I have been diagnosed with h