Living with atopic dermatitis

Living with atopic dermatitis

 

This post is going to be a little different from all the other ones. I don’t know if it’s going to help any of you in any way but I feel like it’s important to share it after witnessing a very unpleasant – and that’s an understatement – situation. As you all know or don’t know, I am a victim of a pain-in-the-ass-disease called atopic dermatitis. Or, as some of you prefer to call it, eczema. I wanted to write this post for you to at least get an idea of how it is to live with atopic dermatitis and to share my experiences.

 

Okay, so the reason I actually decided on writing about something this personal is because last week, I noticed that people don’t really know what skin diseases are and how it feels like to have one. I was waiting for the bus and there was this woman sitting next to the bus stop. Her whole arms were covered in rash combined with flaky skin. It didn’t look nice, in fact, it didn’t look nice to the point where I wanted to cry. I know how shitty it is, even though my atopic dermatitis has never been this harsh. And as she was stepping into the bus, almost every person kept their distance or moved further away from her. I could see the disgust in their eyes, as if she was out of this planet. It was hearbreaking. And the reason why I’m talking about all this.

I always had problems with sensitive skin. But it was alright, nothing serious. Then, when I went to secondary school, I started scratching more and more and more. Something was wrong. I had rash all over my body. When I was about 13 or 14 years old, I was diagnosed with atopic dermatitis. Wow, that sounds serious. It’s usually not something you can die from, just saying. And so it all started. We (my dermatologist, my mom and I) were looking for something that would help me. There were the phototherapies, different creams or even soaps to make me scratch less. I even tried changing my diet. Nothing helped. It only got worse. I was ashamed and I couldn’t sleep. And when I did, I used to wake up from scratching myself so much. I was exhausted. Mostly mentally, but physically as well. I would beg my mom to get me an exemption from P.E, so that I didn’t have to get changed in the locker room nor wear a t-shirt and expose my body. I used to bleed and hurt and still scratch myself, getting blood all over my fingers. Disgusting, right? My mom searched for days for something that could help me since my dermatologist wasn’t able to. She recently told me that she knew that if she hadn’t helped me soon, I would’ve killed myself. She found a topical steroid – Protopic. As far as I remember, it wasn’t that famous in Poland at that time. Turns out my dermatologist knew about it, she just wanted to give it to me after everything else failed. Really? I was literally sufferening and really close to doing something bad to myself but she wanted to test me. Well, I got the medicine and it took some time but it worked. The amount of money my parents spent on all the medicines is unbelievable. But I got better and I could finally wear summer clothes again. It still came back from time to time but not with such intensity. I would just treat it with the ointment then. Unfortunately, after I started taking accutane (that’s a story for another time), it came back and is almost as bad as the first time. Fortunately, I now have had Protopic from the beginning so I have a little bit more control over it. Although I still wouldn’t wear shorts at the moment and it’s not as effective this time. And I still want to cry on some days because no matter what I do, my skin is dry and flaky, and full of rash. It takes me half an hour before sleep to moisturize my skin. And sometimes I get asked what is this thing on my hand or my arm but I know people don’t mean it the wrong way. They’re just curious. I still get embarassed though. I don’t think I could handle people looking at me like I’m an alien. And EVERYTHING is a trigger, especially stress. When I stress, I sometimes scratch myself to blood. So yeah. What I’m trying to say is… If you ever see a person having ANY kind of skin disease, don’t look at them in disgust. They’re not contagious. And people with those diseases already have a bad time because of it when they’re by themselves, don’t make them feel worse about it. I know you might think it’s exaggerating but it can really fuck up your mental health and your whole life. I hope that with this post, I managed to raise awareness and maybe, if any of you is also struggling with this shitty ass ailment, you now know that I’m here going through the same thing. And other people too. Not that it makes anything much better but there are good and bad days. Just wait for the good ones. Thanks,

Olivia

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