Jen, Emily, and Laura have one thing in common, they all have visible scars on their bodies. While Amy suffers from bouts of psoriasis that can leave her face covered with red patches, the four women feel more comfortable with their skin. Why? Let’s get to know their stories.
My legs look like I came straight out of a zombie movie.
Jane, a 49-year-old from Shropshire, says: After undergoing surgery, I developed necrotizing fasciitis, a disease caused by flesh-eating bacteria, and I ate my legs from the middle of my thighs to my feet. In the beginning, there was no meat on my bones from my legs down, they took the skin from my back, my buttocks and my belly and replaced all the skin from my thighs down which looked a bit like the skin of a reptile. To get as much skin as they needed, they had to stretch it to make it bigger.
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I had a condition called “lipoedema” (a disorder in which fat accumulates under the skin, causing the legs to swell). Mostly women are the ones who develop this condition, which is represented by abnormal fat cells from the waist down. I was in the upper half of my body for a size 8-10 and then in the bottom a size 18 at once. I lost a lot of weight, but diet or exercise did not cure this condition and it is very painful.
I kept seeing the doctor for 8 years, then I was told that this condition cannot be treated by the National Health Service in Britain. In 2017 I had the courage to go and have some surgeries to treat her.
I went for operations very excited about the possibility of having a wonderful life, being able to wear normal clothes that I had never been able to wear before, and then about 5 days after my second surgery I became very, very sick. The next thing I remember is that I woke up to find that I was in a coma and totally delirious. I think I was in the hospital for medical experiments, and it was really terrifying. My family was there, and they didn’t think I would survive, and they had to sign consent to the amputation of my legs. It was a very scary time.
It was about 6 or 7 weeks before I actually saw the shape of my legs and it was a huge shock. My legs looked like two piping brushes. And for a woman who wanted to have skinny legs, my legs looked like I came directly from the zombie movie of the living dead. Mentally it was really difficult because I had PTSD, especially with anything medical.
But in reality, what happened made me appreciate my life more. I’ve had a bout of trying really hard to do a lot of things. I want to get as many things done on my list as possible before I leave. I have not visited the Moulin Rouge in Paris or take the Orient Express, and I want to visit Petra as much as I want to go to Amsterdam. I am not sure Karl, my partner, is ready for it, and it is not always easy, and I am not always happy. It is not my character. But I removed the dust from myself and lived the next day with the phrase, “Well that’s it, and we’ll do it.”
“They represent a lot of pain, but they also represent a lot in overcoming obstacles.”
Emily, 25, from London, says: “My scar on my right hand is very close to my wrist, it is slightly higher than my skin. To the touch, it looks a little difficult as it lumps in some areas, and is soft in others, and as for the color, it is a little darker than my shadow. And in my life I have self-harmed 3 times on my arms all in the same place, because I didn’t want to have any more scars on a different part of my body.
The last time I hurt myself was about a year ago. I’ve had this scar since I was about 15 years old, so it’s been 10 years old. It causes a lot of pain, but it also means a lot to me in overcoming obstacles, because I think the reason I can smile now is because I’m not where I was.
I’m getting treatment right now and self-harm is something we’re talking about. I hurt myself, but I don’t see that I hurt myself but rather I was in so much pain inside and I didn’t know how to deal with it.
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The reason I hurt myself the first time was because I did something really bad. I stole a lot of stores, and of course the day I steal a lot of things is the day I get arrested. I just thought I needed to be punished for that.
When I first had a scar I put in a lot of effort to hide it, wearing tight, long-sleeved shirts in the summer where the temperature is soaring and you are sweating and very uncomfortable. And the reason I had hidden the scar was because I thought everyone would look at it and people think they had the right to touch and ask intrusive questions, and I would tell every stranger who asked me about my mental health and self-harm, which is something I don’t want to do.
And I particularly think that with the stigma of self-harm you tend to have this really horrific appearance which is something that either pays off or is incredibly pity for you and they are two reactions that I absolutely hate, so it’s easier for me to say, “Yeah, it’s okay. I was burned. “
The transformation happened for me a few years ago and I think coincided with my tiredness of being so tough on myself. My needs are more important than what others might say. I feel like I am starting to be more secure, removing that stigma from within me. Then I allowed myself to get to that point where I said to myself, “Actually, I will show my scar. It will be there, and if people look at it or say something, that’s fine.”
“I always said my scars looked like tight clothes.”
“I’ve always said my scars looked like tight clothes, from my navel to my toes,” says 27-year-old Laura from Kerveli.
It makes me feel uncomfortable sometimes, because you think people will notice it because you look weird. And if I’m going to Cardiff to shop, people will stare at me.
I like to be described as a burn survivor, because you are not a victim but a survivor of the accident, and I came out stronger.
When I was about a year old, a non-family person put me in the bathtub, and my mother, who gave birth to me, came in and saw what happened and called 999. The water was burning. I have been separated from the family of birth in, and have two wonderful parents.
As a child, it was difficult because you would meet kids who would be bad. I remember that kid who said I had two zombie legs and that I should have died in the bathroom. I remember my first day in high school, wearing a skirt with pantyhose. And at the age of between 15-16 years old I started wearing pants so I hid everything. I had no confidence in talking to people. I had very close friends, and this is how I approached it. I also hidden myself from the world and then decided when I was old between 18-21 years old to say: “This is who I am.”
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I’ve had a lot of conversations with people in a burn club, and a kids’ burn club as well, and I heard a story from someone else and thought, “My life isn’t that bad.” Everyone accepted you for who you were, and that was really cool because then you can spot your burns, and you can tell your stories And encourage each other.
I was about 25 years old, and there were about 8 of us on the beach in swimwear, all of them suffering from different burns and from different social groups, and we thought, “We will post this on Instagram, because we will show people that we are brave, and that it is okay to talk about our burns.”
I was in a beauty pageant. It was the first Miss Universe contest for those with differences and distinctions. I want young people to look at me as a role model and think, “If I can do it, I can do it, I can get out of my shell.”
Explaining it to my partner in life was difficult, I was nervous. When he first saw my scars, he was a little shocked and thought, “How could someone do this to someone?” He hasn’t asked any questions since we met 3 years ago. So everything is normal, but because the skin on my stomach is so tight I am afraid that I will have children because of that. He wants children in the future, and I was afraid I wouldn’t be able to achieve that. That may be possible, but we have to wait and see.
I hope to have children one day, but for now I have my dogs.
“I can’t stand that feeling in the morning when I remember how I look.”
It’s been a few weeks since the psoriasis flared up, and my skin looks really cool right now, says Amy, 34, who is who I was. I still have spots on other parts of my body. The strange thing is that I have taken a lot of pictures of my skin during the severe outbreak of psoriasis and printed these pictures, it just to remind myself of what my skin could be like.
And during the severe attack, psoriasis began on my forehead. At first it was just little dry spots, and it fell over. And eventually they merged with each other, resulting in larger patches of dry skin that crisscrossed my entire forehead. The eyebrows were completely affected, then it spread to the sides of my nose and around my mouth and then the spots spread all over my face, neck and body.
I was constantly suffering from this tingling and burning sensation on all the spots covering my face and body and affecting my scalp the most. During the rampage I started to notice hair loss and I ended up buying a wig to make myself feel better.
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Sometimes it gets so bad that I feel like an open wound. Even the feeling of my psoriasis touching clothes would be completely unbearable. I love all my clothes and love fashion, and I could wear tight fitting pants lined with wool and big baggy sweaters lined with wool, and I could no longer wear bras or underwear, so I had to wear cycling shorts so that the fabric wouldn’t rub against my skin.
When I first had guttate psoriasis (which causes small patches), the condition was incorrectly diagnosed as chickenpox. And over the next few weeks I ended up staying at my mom’s house. She made a small bed for me in her room. And what I couldn’t stand most was that initial feeling in the morning of remembering what I looked like now and having to accept that again. My mom was always by my side waiting for me to wake up. I was bursting into tears and she was comforting me and telling me that I was beautiful. She reminds me that she will get all the necessary help.
You are aware of other people’s reactions. At work, clients would tell me, “Can we not get the service from you, because you are most likely infected with something contagious?”
I work in the retail business, so I sell fashion. At first I found myself saying, “Yes, that’s fine. I’ll come in someone else to serve you.” And it didn’t take long for me to be able to tell people, “I’m not contagious, I’m totally fine, so either I’m serving you or it won’t get service.” .
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All of my friends and family have been truly supportive. I was single at the time. I didn’t expect to meet anyone during a psoriasis flare-up until I met my partner in life. When I first met him, he had absolutely no questions about my skin. He didn’t inquire about it and didn’t look at me differently, just approaching me and saying, “Wow, you’re beautiful.”
And people started calling me as soon as I posted my picture on social media and they said, “You really are an inspiration”. That was when I had to accept it, and I thought, “Wow, I never thought I’d ever consider myself an inspiration to anyone.”
Interviews were conducted by Ina Miller for the program “Woman Hour“ It was broadcast on the days 4, 6, 11 and13 I am a city August.The interviews were summarized and edited by Lucy Wallis.