What It's Like to Live With Epidermolysis Bullosa

A version of this article originally appeared on Tonic Netherlands.

When I was born, it was clear that something was wrong with me: I was bright red and covered in sores. Doctors thought it was eczema, but my parents weren’t so sure. Over the course of my childhood, my parents took me around to see an array of different doctors. They all said something different and would give me a new lotion to try out. I’m 34 now, but medical science back then wasn’t as far advanced when it comes to genetic research, and my skin condition was relatively unknown. When I was nine, we ended up meeting with the only doctor in the Netherlands who could help me. He diagnosed me correctly; I have epidermolysis bullosa (EB).

EB is a hereditary and incurable skin disease that is also very uncommon. One in 22,000 people worldwide has a form of EB. In the Netherlands, that means there are only 600 registered patients. Due to the genetic mutation that causes my disease, the layers of my skin aren’t attached to one another. My body simply doesn’t produce the specific kind of protein the skin needs. Because of this, even the slightest rubbing or touch can cause my skin and any mucous membrane in my body to blister.

I got the EB from my mom. Aside from that, I have two other skin conditions: psoriasis and eczema. I inherited the psoriasis from my dad and I call the eczema a free add-on. As far as I know, I’m the only person in the world that has these three conditions simultaneously, so you could say I really hit the jackpot.

I have to take many different things into account on a daily basis. I can’t just put on any pair of jeans, I need to make sure it fits well and there is no friction between the pants and my skin. I only buy second hand shoes because they’ve already been broken in. New shoes basically ruin my feet. I wear my socks inside out, because the seams cause blisters. I can only wear certain bags for an hour or so, because the straps rub against my shoulder. I can’t wear jewelry. And when I go to bed, I make sure the sheets are tucked in tight, so there are no folds.

In a way, my skin conditions all aid one another. Eczema and psoriasis cause itching. And what do you do when you’re itchy? Exactly: you scratch. This causes lots of rubbing, which makes my EB flare up.

The blisters cause big, open wounds. When they come into contact with oxygen, there is a high risk of infection. Those sores heal very slowly and need to be dressed with silicone wrap. Changing the bandages from head to toe takes quite a while. How often I need to do this depends on how bad the EB is at that moment in time. If it’s bad, I try to change the dressing every day. But it’s really hard to do daily because it hurts so bad.

To keep the physical pain in check, I take morphine pills twice a day. This helps to manage both the pain in my skin and the neuropathic pain that is caused by nerve damage. Because my nerves are damaged, there this ‘short circuiting’ that happens [in my neural pathways], so I’ll suddenly have a lot of pain in a certain place for no reason.

The lesions are very visible on my face. Everybody notices and this has had a big impact on my life. When I was little and still got pushed around in a stroller, my oldest sister once put a sign around my neck that read "looking costs a quarter." She was fed up with everyone staring at me.

In elementary school, middle school, and high school people talked about my skin a lot. Not just my classmates—their parents, too. They were scared my condition was contagious, or told my parents that I needed to take more baths.

Leaving the house is still not easy. When I walk down the street, people can be very rude in the way they stare at me. My boyfriend and I call it the "stare at the blister" look. I also have to constantly field questions and remarks. Strangers come up to me without hesitation to ask if something bad happened to me, or to say that their neighbor’s nephew had exactly the same disease; I just need to get this one lotion at this one store and I’ll be fine. I usually nod because they mean well, but you can’t change my DNA. Because I have a visible disease, it’s like I’m public property and people can just ask me any personal questions they want. They’ll really say anything; it’s unbelievable.

The Dutch proverb "unknown makes unloved" applies here: People have no idea [what I have] and it scares them. For them, it’s their only interaction of this kind that day, while I have probably answered the same question for the fifth time in one morning.

I try my best to ignore their remarks; let them go in one ear and out the other. It helps to have someone else there with me so we can joke about it or return the stares. But it does affect me mentally. I’m constantly reminded of the fact that something is wrong with me, that I look different. It’s both confronting and exhausting. I’d love to get lost in a crowd sometimes, but I can’t be invisible. It makes me aware of every gesture and move I make.

How I respond to stress varies day by day, and quite literally depends on how I feel in my skin. I try to not let it bother me, but on days my skin is worse, I have a hard time taking on other people’s reactions to me. Often, I’m inside for days at a time and prefer it if my boyfriend does the grocery shopping.

EB comes in different levels: I have a dominant, or mild, variety of epidermolysis bullosa dystrophicans. Basically, this is the second-worst variety. The worst kind also gives you internal blisters—on your organs and esophagus, for instance. This can ultimately cause trouble with eating, drinking, and breathing. People with that variety don’t grow very old: I wouldn’t have been able to reach my age if I had it.

The doctor who diagnosed me when I was a little girl still treats me to this day. Through the years, he’s created an entire "EB team" with caretakers who have ten different specialties. They watched me grow up. I always call them the aunts and uncles you’d rather see less of.

Three years ago, I suddenly became very ill. I was completely exhausted and was in the hospital for six weeks. Doctors discovered that because of the amount of scar tissue I have, the nerves in my arms and legs got damaged. After that, a lot of things in my life changed. I wasn’t able to work at all anymore, and I ended up just sitting at home all the time. I would often be so tired and sick that I had to cancel on people. A few friends probably didn’t have the patience for this, and they disappeared on me.

On the other hand, this period also brought me a few really close friendships with people who did stick around. Those are my real friends; they have a seemingly endless amount of patience and take me into account by coming to me when I have a bad day, or picking me up in the car. That’s really awesome.

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I don’t have my own drivers license, but even if I did, getting behind the wheel wouldn’t be a good idea. Due to the large amount of scar tissue, I have nerve damage in my legs and they can be incredibly painful. That’s not the type of pain you want to have while you’re supposed to push on the gas or pump the brakes. Aside from that, I’m basically always high because of the pain medication I’m on. I barely notice it anymore, but it would severely impact my ability to respond quickly. In short, not very safe.

I live together with my boyfriend. He’s also my caretaker; taking care of me is officially his job. He does an amazing job. Especially when it comes to household chores, he has to do way more than he would have in a relationship with someone else. He has to do the shopping, and when I want to go somewhere he’s usually the person who picks me up and drops me off. We’re used to it and work as a team. When I get very sick and end up in the hospital, it’s the two of us together against the EB. I don’t know what I would do without him, but I know that together, we’ll get through it.

Even though other people’s touches—like a firm handshake from a large man—can cause my skin to blister, I’ve never had to make ground rules for my boyfriend about that. Everything just happened very naturally, and he notices when something is working or not working. And if he makes a mistake and causes a blister, there’s nothing we can do about it. Shit happens.

People are always afraid to ask, but they are definitely very curious about our sex life. So yes, we are able to have sex. No intricate positions or marathon sessions that last for hours, but that goes for most people. It’s sometimes hard for me to see my body as something that can also bring me positive experiences. But this, too, we can navigate together. It sounds cliche, but talking to each other is really the only solution in these situations.

We recently took a trip to Antwerp. While I’m exploring the city, I know my skin will be damaged when I get back home. But it’s worth it to me, because we did something fun together. I will get blisters no matter what. I’d rather be covered in sores and know I did something really cool, than have all these blisters just from laying on the couch.

I think I would have been a completely different person without this skin condition. I would probably have been a lot more shallow: I now know that health, and especially your body, aren’t a given. You can’t just assume everything will work and function the way it’s supposed to. If it does, you’re fucking lucky. And I don’t take anything else for granted either. Be happy with what you have. And look at the things you can do, instead of only focusing on the things you can’t.

Having a chronic illness does have upsides too. I have all the time in the world to read books; I love jumping into someone else’s world and becoming a part of their imagination and fantasies. I also like crafting. Doing something creative makes me really happy, and I don’t have to leave the house to do it.

Yes, I have a disease. But my disease doesn’t define me. I am Sanne and I happen to be ill. And it’s really great when people can look further than skin deep, because I am more than just my skin. I can imagine that people see me as a sad, pitiful little bird. And when you add everything up, I’ve of course been through a lot. But I don’t feel sad, and I definitely don’t need to be pitied.

For more information about Epidermolysis Bullosa, go to Debra of America.