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An Ostomate Activist with Ehlers-Danlos Syndrome

by Naomi Schwenk |

Hi! I'm Charlotte. I'm 22 years old. I live in the UK. I talk on Instagram about body acceptance, mental health, chronic illness, that kind of thing.

What is Ehlers-Danlos Syndrome?
EDS is a connective tissue disorder, and connective tissues are all over your body so it can affect any part of your body. There are 13 different types. I have the most common type, which is the hypermobility type, also known as Type 3. It mainly affects my joints and my digestive system. My muscles don't really have the support that they would have if I didn't have EDS. 

What is an Ostomy? 
An ostomy, also known as a stoma, means the same thing. It's a bit of intestine that usually sticks out of your stomach. So when you'd eaten and have to go to the toilet like a normal person, instead of having to go to the toilet, my waste empties into a bag, which I have on my stomach. At the moment, I always have a bag on my stomach. There are different types of ostomies. I have an ileostomy, which means my small intestines stick out of my body. Not the whole thing, though, just a bit. 

How does having an ostomy and EDS affect one another?
Most people who have an ostomy usually have it because of Colitis or Crohn's or cancer or various other reasons. I've got it because I couldn't eat solid food for a whole year. My digestive system pretty much shut down. My colon was paralyzed, and my rectum was prolapsed all over the place. Having the ostomy helped me eat solid food again. And now I have an ileostomy. The ostomy and EDS don't really affect each other too much. With EDS, the skin is a lot more stretchy and more fragile in general. So the skin around my stoma is still quite sore from the surgery cause it's just taking that much longer to heal, about two years now.

What does body acceptance mean to you?
It's not easy, but it's so worth it. When you totally accept your body, you're not afraid to do things that you want to do. You can go to the beach, and you don't have to constantly worry about how you might look. It's about doing things that you want to do without your body holding yourself back because everyone's body is different. Um, Just because you may look like different from someone else doesn't mean that they're right and you're wrong. It's just different. And what does that mean? Unique is beautiful. So I think it's just accepting how your body is and not being at war with it the whole time.

Could you tell us a little bit about the 2018 Victoria Secret Protest in the UK, the whole mission behind that, and a bit of your experience being involved?
That was in December, back in 2018. It wasn't long after Victoria's Secret and their CEO said some really controversial comments about how they will never have anyone who is plus size on the catwalk, and they would not have any transgenders. So we thought that wasn't right. That was really insulting to a lot of people because not everyone looks like a Victoria's Secret model. So we ended up going to Oxford Circus. There was a little group of us, all completely different.

We did this with a great group called Love Disfigure by Sylvia Mac and collaborated with a brand called NüNUDE, run by Joanne Morales. (NüNUDE is an underwear company that caters to women of every shape and color — and Love Disfigure is a group that celebrates bodies with disfigurements.)

So we use the NüNUDE underwear, which is all just different shades of nude depending on your skin color. And we went into Victoria's Secret shop in Oxford Circus, and we just stripped off into these NüNUDE underwear and holding signs up. Eventually, we came out to the store, and as soon as we came out, there was a whole crowd just watching us. So we ended up making a bit of a photoshoot out of it, posing in front of it, doing catwalks in front of it. And then we ended up going to the center box of the circus, where there are really busy roundabouts. And we just kept running into the roundabout when it was safe holding up signs about why we were there. We're there to promote positivity and acceptance and to try and get more inclusivity into the fashion industry. And it went viral. Wow. It was amazing.



If there is one lesson that you've learned from all of your experience in life and you would like to pass it on to someone else that may potentially be in the same shoes or similar shoes, what would you share with them?
Whatever situation you're in, I think you need to keep persevering. Keep going cause...whatever's going on in your life, you will get there, and you will be okay. As cheesy and corny as it sounds, but you need to be kind to yourself and your body in the meantime because whatever's going on, it's not your fault.

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