By Kai Essex

I mostly get blisters on my feet. It can stop me from walking, especially during summer because of the heat, it's the worst. Sometimes I just cannot walk at all. 

When I have blisters, I have to swap how I walk. For example, if I have blisters on the front of my feet, I have to walk on my heel to avoid it. Then I get blisters on my heel. Then I'll try walking on the side of my foot but then blisters will form there and so on. Eventually I run out of new ways I can walk. Sometimes I have to walk around the house on my knees. I can get lower back pains, upper back pains, neck pains too from walking badly.

Even when I sit down in class and the pressure has been relieved, my body still thinks I'm standing up. It feels like my heart is in my feet, I can feel the blisters throbbing, stinging, aching. It's excruciating. It's really hard to focus on school because of the pain.

Sometimes in school, I say I have a headache rather than my feet are hurting because it doesn't make sense to a lot of people. If I just say I have a headache it's easier because I don't have to explain. At secondary school I'll have to explain to like 17 teachers. That's going to be a rollercoaster.

There have been some occasions where I've had to get in arguments because it just feels like I'm not being heard. I don't think people are trying to be rude, it's just no one knows what it is really like. EB isn’t something common like asthma. You have to go through the vicious cycle of explaining it. Then some people will be told about EB and they won't pass it on. The amount of times I have to repeat the same phrase 'I'm in a lot of pain' is ridiculous.

I love PE but it gets to the point where I cannot take part. I just have to sit out. I only do about half the PE that I'm offered because the other half, I'm just in so much pain I cannot do it. If I do join in then the next day I'll have blistering all over my feet and then I'll have to take time off school, it could even be a week because I have to wait for the blisters to heal. Sometimes the blisters just don't heal but I can't just be off school all the time. So I have to go to school dealing with that pain. 

I don't go out and play at lunchtime because the heat and the sweat will cause blisters, even if I'm not walking. So to avoid that, I'll stay inside and sit down.

If I'm at home there's a lot more I can do, I can properly soak my feet and take better painkillers. But I have to have an education. It's even worse because at school I don't have all the help I have at home.

The only thing that takes my mind off it fully is to sit and game because then I'm immersed into something and my brain isn't thinking about the pain in my feet. That's the only way of distracting myself.

If there was a treatment I could put on and it meant the blisters would go, it would be amazing. There's no cure for it. I take paracetamol but it doesn't really help. It’s just like, what am I supposed to do?

 

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The DEBRA UK Community Support Team provide support and care for the EB community, including support throughout education, from starting school, to going to secondary school, to preparing for university.

 

The EB stories blog on the DEBRA UK website is a place for members of the EB community to share their lived experiences of EB. Whether they have EB themselves, care for someone living with EB, or work within a healthcare or research capacity related to EB. 

The views and experiences of the EB community expressed and shared through their EB stories blog posts are their own and do not necessarily represent the views of DEBRA UK.  DEBRA UK is not accountable for the opinions shared within the EB stories blog, and those opinions are of the individual member.