Carin
Sometimes in a rage, I think: give me the cheese knife, I want to be rid of these spots. I also wish to have smooth skin.
I cannot accept what I have. They call it Acne rosacea. Honestly, I don’t even want to accept it. God wants us to be healthy. I just know for sure that one day, maybe after a long time, that I will be a complete person: sound of body and soul.
I know my spots intimately. Without a mirror, I can point them out. My skin is for the people around me, a side issue. For me, they are the main issue, even though I know that I am not ugly. Despite my illness, I do have nice skin.
Miranda
Without even asking me, doctors have a ready diagnosis: “oh, eczema.” At the drug store, pots of cream are pushed into my hands. In the supermarket, I hear them whispering: “she has aids.” This affects me enormously. What helps is having contact with others in the same position. I once met another SLE patient in the waiting room. You recognize the spots, a kind of butterfly form. We stared at one another intensely, faces close to one another. That was special. For me, it is all or nothing. This works out with my sickness. One day I am sinking through my knees; the next day, everything is fine. Today I look good, but at other times my whole face is infected. Of course, you keep hoping for a cure. I have tried the strangest tea concoctions, have had my face injected with prednisone. Nothing helps.
Naomi
I have something without a name, spots, neuro fibers, and swellings. No doctor can do anything for me.
My body used to be my enemy; now, I try to love my body as much as possible. I can feel if swelling is malignant. Recently I had one in my breast. If they feel fine, I leave them. This one worried me. The doctor did not believe me. I kept at it, though. I was not surprised. I am always right.
Now, if I feel something, I do not need to have it tested. The doctor said: you know your body so well.
Lex
A person can wound me by just touching me softly; that is how quickly my skin breaks. At birth, I was already partially skinless. In the baby-box, I was motionless; moving was too painful. I spent my youth in a bandage. Because of this, my development was severely affected. At times I feel nothing.
Twelve cases of arson are attributed to me - no deaths or injuries occurred. I started the fires with a clear head. Whole buildings exploded before my eyes - it was very arousing.
During rehabilitation, a possible link between the fires and a longing for physical warmth was suggested; at the time, I did not want to consider this, now I understand the connection. I have been out of rehabilitation for ten years. From time to time, I have physical contact with a woman. If only I had discovered this sooner, a lot of pain could have been prevented.
Mariko
Seventy percent of my skin is covered in birthmarks. On my arms, legs, and face, I have a lot of small birthmarks. My stomach and back are one big birthmark.
That is the way I was born. I am the oldest of triplets; my two little brothers do not have anything. When I see baby pictures of myself, I sometimes think: was that me? Back then, my skin was fat and wrinkly. And I had a large bump on my back. The lump has been removed; it really looked scary.
My parents have thought about skin transplants. The scars, however, are uglier than the birthmarks. Now I think: the marks are a part of me.
I used to say: mama if all my marks are gone, nobody will recognize me anymore.
Rini
In the photo, I see a reproachful, mistrustful look. You need to get behind the outside to find out what is inside. The fact is my life started with a lot of pain. I see that when I look at this picture. A sort of dissatisfaction, as if I can’t quite get it together.
At thirty, I was admitted. It lasted one and a half years. After therapy, I started living again. I had no work, no relationship, and was alone in the city. At this time, I got L.E.; at first, it was a dark red band on my arm and back, later it turned into spots on my face.
The L.E. can be handled, but not cured. I have come to terms with this, just as I have come to terms with my past. I was an old man. Until my thirtieth, I was a moralist who knew how the world was. Now I am open to what life has to offer me.
Tineke
If I scratch away my skin, something beautiful emerges. That is my fantasy as if I am now wearing a mask. But then, sometimes I think I don’t have my mask on enough, that I am too open, too sensitive.
I can feel very ugly because of my skin, but also because of dissatisfaction with my life. If I am unhappy, I shift all the attention to my skin. This way, I can ignore all the other problems in my life. Apparently, I need to do this; otherwise, I would just give up.
Since discovering this in therapy, I am able to let go of my skin. That is why I sometimes think: if I can solve the problems behind my skin, I will look better. It is a dangerous assumption as if I am responsible for my skin condition. Let me put it another way: I am not in therapy for my skin.
Dafnis
Marjolein van Kessel, mother of Dafnis:
“When Dafnis was born, I couldn’t bond with him. I did not know if he would survive. He had large black birthmarks all over his little body and face. The most massive mark covered his lower back. Something like this cannot be seen on an echo.
He was operated three times within the first twelve weeks of his life. After the second operation, he got eczema. And after the third operation, he contracted a lung infection. He stopped breathing and turned blue. When he came to life, I knew: I will never let this child go. We had a difficult start. Only since his second year can I enjoy him fully. Dafnis is a very special child.”
Ganna
Remko
People, who have not seen me in a long time, don’t know who I am. That is handy if it someone from the past who I don’t particularly want to meet. I walk by as if invisible.
From childhood onwards, I have always felt different. I was fat, clumsy, and got teased. My hairlessness is, in a way, the crown of my existence. Now, my appearance also makes me different, except perhaps among the gabbers on The Leidseplein. There I look normal.
Some times I do not recognize myself, like when I was last at the Stopera. In the mirrored glass, I was looking for someone with hair, but that person disappeared four years ago.
Apparently, I still need to adjust the mental image I have of myself compared to reality.
I fantasize about tattooing my head, something Buddhist, with abstract patterns. That would be cool. But you know, I am an accountant.
Gerald
Until last year I lived as if my skin did not exist. I avoided mirrors. I fought eczema with extremely aggressive medicine. It makes you feel so good that you continuously overstep your boundaries. It causes stress, which affects the skin. It is a vicious circle.
The second half of my life is going to be different. My therapist says he can cure me. I am human enough to doubt this; still, I have the feeling he may be right.
Things have changed. I am calmer now. I also try to find myself less ugly. The eczema is less, but the misery is still there.
My night is often sleepless. I have a lot of pain and scratching. It is as if I live in a burning harness.
Henk
You might as well know, I was a drinker. Crawling over floors, that is how drunk I was. Drinking helps against the itching, but it irritates psoriasis. If the liver is overworked, an attack occurs. My liver is now susceptible. Now I try and take it easy.
I have learned to deal with this by gathering knowledge. Doctors know what psoriasis is, but they cannot help you get rid of it. Psoriasis will always be with me. I have accepted this, but I am still always busy with it, day and night. It is not fun. My girlfriend rubs me down with tar grease every night. If she had psoriasis, it would bother me. The continuous greasing, the complaints of pain, and itching. It is a bother if I do say so myself.
Once a year, I go to the Dead Sea, a month of baking in the sun. You see the flakes disappearing, and within a month, they come back. Oh well, better one month a year looking like a human than twelve months of looking like a beast.
Liesbeth
I am very aesthetically oriented; I want to make things beautiful. My skin is ugly, but I try to use this by making my own special attire, from thin subtle materials.
Because I am so aesthetically inclined, magazines that show only perfect people angers me. Western people are becoming more and more estranged from themselves. In Africa, everything is on the street: people with blisters and crippled legs are a daily part of life. With us, everything that is aberrant and hidden away.
If you have a pretty face, you can get away with more. I was quite pretty before the red cones started appearing on my face at twenty-one. CDLE it’s called. At thirty, the Psoriasis showed up. I really had to change gears when my appearance changed. Receiving attention was no longer a given.
Still, I have never been rejected because of spots. One time I was lying on the beach sunbathing. A very handsome guy came up to me and asked what I had. He was a medical student. We spent the whole afternoon kissing. He found me very interesting. I guess I was something different.
Elly
Just by a handshake, I can tell how a person is judging me. If it is a firm hand, I know: they accept me. They have courage. At a weak hand, I think: bah, another person who is afraid of me.
My first bubble appeared when I was seven at the age when you want to start dating, a lot of bubbles appeared. I once took dance lessons, and I still looked good enough to be asked.
I am alert and down to earth. This illness has, of course, defined a large part of my life. It is not out of choice that I live alone, with no family.
My life is, however, active. I go on vacation, love driving, work five days a week in a bank. People do not expect this of me. I continuously have to prove myself, and this saddens me deeply.
Ria
A bald head is fine if you want to be eccentric. If it’s not what you want, being bald is difficult. Without hair, you are not yourself. With a wig, you’re not yourself either.
I used to have hair past my shoulders. Every day I combed my eyebrows into shape. Now I have tattooed brows and eyelids. I also use false eyelashes.
Without my lashes, I don’t dare look at people, except for my friends. When they visit, I don’t even bother with a wig.
In a strange environment, I feel less vulnerable than in my own city. While on vacation, I usually go without a wig. If I purposely walk around without a wig, it is because I want to. I do not feel unsure. Of course, people look. But then I think: imagine if they didn’t look! Then I would be ignored entirely.
