:. Completely impossible not to scratch
University Hospital of North Norway interviewed Maja, a 45 years old lady who suffered from eczema. She has had first hand experience with eczema, first in childhood when her sister suffered from it and later on as an adult when herself was diagnosed to have this condition. She also has a child with atopic eczema.
Maja was 25 years old when she was first diagnosed to have eczema. Despite having witnessed how her sister suffered from eczema at a young age, she never thought the same would happen to her.
“ I did not think that it was atopic eczema at first. I thought it was a reaction to something. It started from the knees, spreading distally to the feet. Slightly on the elbows, but I did most of my feet but it was worst on the feet. In the end, I figured out it could be eczema so I went to the doctor and got the same treatment regimen as my sister when she was young.”
When the diagnosis was confirmed, what were your thoughts?
I am not sure if I really accepted the diagnosis.
:. Lego pieces and layered shoes
Did you soon control the eczema?
– I was very bothered for a long time. It is so itchy and I had to keep on scratching and became worse at night. I would use Lego blocks to scratch the site, and even table knife – it was absolutely hellish.
Does that mean the treatment did not help much?
– No. I felt that the cream helped the itch. Itchiness is the worst possible experience. I could probably live with eczema if not for the violent scratching. When I scratched, sores emerged which prevented me from wearing shoes. In order to go outside, I had to cut opening into my shoes which was a bit embarrassing.
Did you have any special strategy to tackle the itch?
– Whenever it itched I would find something to scratch it – such as Lego blocks.
Was it hard not to scratch?
– It was absolutely impossible.
Did your eczema get better eventually?
– I think the disease burned out for a while. Until I got pregnant, it relapsed all over on the legs again.
The treatment is quite demanding and health care professionals today emphasize on educating patients on the knowledge of the right treatment. How was your meeting with health care professionals?
– When I had eczema, I received no follow-up. I received creams as treatment but with no teachings by nurses like you get today. I did everything myself and just plainly followed the package guidance and what the doctor had said. I did not get antihistamines as I did not tell my doctor that I itched so violently.
How was your eczema control during pregnancy?
Apart from scratching over the legs, I was fine during the pregnancy. Since the sores I got from eczema made touching unbearable, I had to cut up my shoes. As a result, I could not travel as far. As eczema affected mainly ankles and the feet, it affected my mobility, making my lifestyle passive and sedentary.
How old was the oldest son when he developed eczema?
– He was eight months old.
Regarding treatment, how did your partner contribute?
– I was alone with my son when he was about two years old. I was alone as well while I was pregnant with the second child.
Does that mean you had to manage most of the treatment alone?
– Yes, it’s mostly just me who takes care of him. When the symptoms of his eczema has erupted, he has been in my home.
How did the eczema evolve?
– His eczema started to improve when he was 11 years old and the disease course had been static until then. He will soon be 15 years old. Now he is bothered by the symptoms again. I reckon this is similar to the old episodes that he experienced after having a period of quiescence in eczema.
:. Stuck in pajamas
Can you describe the difference between having eczema yourself and having a son with eczema?
– That’s my baby. When your kid is sick, you try everything as you do not want to see him suffer. When he was small, his skin stuck fast in his pajamas because he had scratched so much at night. There was dried blood and serous fluid, so that was bad. Once when I undressed his pajamas, he began to cry, because his skin had stuck in his pajamas. I was not aware of it. We have to learn to live with eczema..
Have you had the feeling of helplessness?
– Yes, especially when there are exacerbating episodes of the eczema. When one has completed a course of treatment and yet it recurs repeatedly, one could not help but to feel helpless and having a bad time. Whenever it recurs, you have to go through the same treatment regime again and it requires a lot of time and energy. Yet, it always recurs.
Have you met others in the same situation?
– Yes, when we moved our home to Tromsø from Oslo and visited the hospital there, we received enormous support. I remember we were shown a film about other children who were sufferers of atopic eczema as well, which subsequently changed my son’s perspective. Knowing that there are other children and even younger infants who had more severe eczema than he does, on one hand it was very sad for him to see it; on the other hand we both felt empowered by the fact that we are not alone.
:. Permission to scratch
When it comes to living with the disease, do you think your experiences have helped you and your son?
– Yes I believe so. After understanding the underlying reason of why he scratches, I became more patient because I know what serious itch is about. I wouldn`t stop him from scratching. I figured this is the only way that helps from time to time.
When he was younger, I would take him on my lap at night. Only that would it help diverting his focus away from the itchiness so I could read bedtime adventurous stories to him. I was a housewife then, having the time to tell more bedtime stories to help my children to forget about the itchiness. But it was exhausting.
We talk a lot about coping. How has he managed to live with the disease?
– He has a spectacular character in him and he is a very positive teenager. During the last flare, he started treatment without hesitating. He has never complained. He has learned to live with the disease from the very beginning.
How did it go at school?
– I remember that during first grade, he had a lot of eczematous skin changes on his face, which aroused the curiosity of his classmates. He was bothered by it and became aware of the problem thereafter. One day during drawing class, his face was drawn with many dots by his classmates. But he had a wonderful teacher who asked me if we could show his eczema to his classmates. This allowed his classmates to understand more about eczema. It was fine by him.
Now that he is about to become an adult, have you talked to him about eczema?
Yes we talk about it a lot, just a while ago when he had a flare. Teenagers often find parents’ reminders very fussy. I find myself saying “Have you greased up?”, “Do you need help on moisturizing your skin?”, “ Have you done this and that?”.
I noticed that I am a controlling person. For instance, he has eczema on his fingers now and I keep checking if he is wearing gloves after putting on the ointment.
What would you say to others in similar situations?
– I think it is important to understand the difficulty in managing eczema well. It takes a lot of energy, time and resources and the caretaker is often drained and exhausted. Had I not been a housewife and had taken a job instead, it would have been a nightmare. I can not imagine how I could have managed that. It is also essential that both parents address the problem together rather than doing it all alone. You have to honor your own needs as well, which I was not good at.
In hindsight, I could have done that better. I was very tired at that time. Therefore, I think you have to name your limits and set boundaries. And inform others about the eczema which I consider mostly a nuisance, rather than a disease.
Thank you for your time for our interview!