What defines you?

I had something completely different in mind for today’s blog post.

But then I stumbled upon a TED talk that I just couldn’t ignore.

It hit me right in the heart. My soul summersaulted, and I couldn’t look away.

It’s just so amazingly impressive.

And although you may have already seen it, I ask you to watch it again. It’s 13 minutes better spent than scrolling Facebook, that’s for sure.

This is Lizzie Velasquez TED talk. She was named the world’s ugliest woman.

Just listen to the power in this amazing woman.

Wow.

“Can I scrub this syndrome off? It would make my life so much easier if I could.”

I don’t want to draw parallels to my diseases from Lizzie’s. She’s going through something completely different, and I don’t want to even try to claim that our situations are similar in any way. For one, most of my stuff isn’t visible, so they go unnoticed easier by people I meet. But: there are similarities in the personal perceptions and reactions toward the conditions.

She brings up a super valid point, that it’s important to take a step back and look at the benefits of your disease with some distance from yourself – what have you gotten from your condition that no one else has?

For me, it’s the courage to say when something doesn’t feel right. To realise that I’m so much stronger than I ever thought I was. I’ve become so good at always being on time. That I can help people in similar situations. I very rarely forget to so or bring something somewhere. That, until recently, I had no problems jabbing myself with a syringe in the middle of a restaurant (now I’m on an insulin pump, significantly lessening the jabbing incidents). To mention a few.

You do have to acknowledge the difficulties too, though.

It’s  a roller coaster life, but that’s OK (But I don’t enjoy them much at amusement parks, either.). And scary things have happened. And that’s OK, too.

And for a really long time I’ve let all of what’s going on on the inside of my body define me. I’ve been defined by a number, a value, most days even several different values a day. Judged by doctors and caretakers, saying it’s “not good enough”. Dreading the next check up, blood test and “what if’s” and “oh no’s”.

It took me an even longer time to realise this. And do you know what helped me? What made me see that I’m so much more than some diagnoses on a piece of paper? My top 3 is:

1. Acceptance. Accepting that this is part of my life, and will most probably always be so. It’s given me a sense of freedom, to keep fighting and to never give up.
2. Ignoring smirky caretakers. The number of times I’ve swapped doctors because I want to be taken seriously is not few. (Just did it again this week, actually, after a particularly rude doctor didn’t do his job well enough.) It sounds really harsh. But, I do expect the doctors that treat me to do their job properly. Especially in this part of the world.Building my awesome dream team of doctors, nurses and yes, even receptionists, ready to help me, has helped me so much in realising that yes, this is part of me, but it’s not ALL of me.
3. Eating properly. My values are volatile as it is, and I really do not need to complicate everything further by eating a menu full of BS that has been fed to me by aforementioned (and “fired”) care takers. That’s why I’ve come up with my own solution, that doesn’t clog up my system as much. That leaves me feeling better, with more energy and a happier perspective on life. (And if you want, I can teach you how to do it, too!)

You have to be able to mourn a bad result or a flare up; you have to trust that you’ll pick yourself up again after a set back or break down. That’s part of having a chronic condition. But it’s up to you to choose to accept it as a part of you and decide where you want to go in life. You can use the negativity to make you better, just like Lizzy says.

I really take my hat off for Lizzy, whilst giving her a standing ovation. For having the immense courage it takes to talk about yourself in such an amazing, authentic and open way. For not giving a damn rats ass about what people think. For being a fighting spirit and so crazily strong. And for being an incredible inspiration. If she can, so can you and I.

“My goals, success and achievements define me, not what i have.”

The world’s your oyster and the sky’s your limit.