This interview is the third in my series on kids with chronic illness. This time I interviewed my friend B’s 17-year-old daughter M. As B put it: “My daughter has two autoimmune diseases: psoriasis since age five and type 1 diabetes since age nine. Although she may be pretty laid back about it all, she definitely has had some very scary instances and rough patches. It does affect her daily life as you could imagine. She will probably say she hates the skin thing worse than diabetes due to it being so visual, even though the consequences are much worse for the latter!” As we discussed the topic of the interview, B stated: “I think we all see the issues, that there is not enough awareness about it. SO many kids are sick now with chronic illness, it’s a bit scary really”.
Sarah: Can you please tell me what illness/illnesses you’ve been diagnosed with and describe its/their symptoms to me?
M: I’ve had psoriasis since age five and diabetes since age nine. The psoriasis involves plaques all over my skin in the form of patches of dry red skin and bumps that are slightly raised from the normal skin. This affects me more than diabetes. If I could give up anything, I’d give up psoriasis any day. It’s very noticeable. People mistake it for chicken pox and other skin conditions. It gets worse with stress. Stressing about my psoriasis brings it out even more, so it’s a vicious circle and it’s so itchy that it bothers me to the point where it bleeds.
I can deal with having diabetes. Only thing that bothers me is all the annoying questions I get – people think I can’t have any form of sugar whatsoever. Other that than it is easy to handle.
Sarah: How has this changed your life?
M: With the psoriasis I am more cautious with what I wear and what I do. I’m always self-conscious about it and wear layers at school so my arms and legs don’t show. It’s worse in summer due to the heat.
With the diabetes I have to test my blood sugar when I eat and put my numbers in my insulin pump. That’s the only thing that really affects me.
Psoriasis affects me emotionally. It’s just terrible having it and 100-times worse as a teenage girl! I do sports so I usually have to wear shorts and my legs and arms are exposed and people will stare and make degrading comments, which affects my self-confidence. It just hurts. What people say and think really affects my self-confidence and how I perceive myself.
If I take steroids for the psoriasis, this raises my blood sugars, so there’s no medications I can take. The only other alternative is expensive tanning beds with a special kind of light.
Sarah: How have your friends and family reacted to your illnesses?
M: My family has always been on my side. They don’t think anything of it.
At first, my friends had questions, but now it’s like they don’t care. It’s nothing. It’s the outside people that it bothers.
Sarah: How has this affected things at school?
M: It’s affected me dramatically at school. I get scared about wearing shorts because of people saying things or making rude comments. I always wear a sweater with jeans or sweat pants to cover my arms. I cry at the end of the day. It’s terrible going to school and not being able to wear what I want. I have all these clothes like tank tops and shorts I can wear, but it’s difficult because I know that at the end of the day I’m going to be distraught emotionally. A couple of teachers asked me about it, but they are not rude about it. They just ask what it is. It’s not as hard as the other people who ask whether it is chicken pox or contagious.
I have an insulin pump and often the teachers at school think it’s a phone, so send me to the office and I get into trouble for having a phone during class. There were a couple of incidents at school where I collapsed, fainted and the teacher had to carry me to the office. It was embarrassing. When it comes to my packed lunch, I have to make sure I have the right amount of food so that my sugar levels don’t go crazy.
Sarah: Has anything positive come out of this?
M: To be honest, the only positive thing that came out of both of these illnesses is knowing that there are some of my friends who don’t care or judge (they like the real me), but other than that I really can’t see any positive things about this.
Sarah: What has this experience taught you?
M: Just to be stronger and to try and ignore the people who make nasty comments or think of it as something different. Try to ignore people.
Sarah: If you could change anything about the way society deals with chronic illness in minors, what would that be?
M: People would know about it more, particularly psoriasis – that it’s not contagious, you won’t catch it by talking to me and it’s not chicken pox. They’d just be more aware of it.
Diabetes is kind of more known, but it would be good if more people could differentiate between type 1 and type 2 because some people think I got diabetes from being overweight, which I didn’t.
Sarah: Would you be interested in being put in touch with others in your situation?
M: Yeah. It would be good to talk to people who understand where I’m coming from and who could relate to me.
Sarah: Thank you very much for your participation and for helping to raise awareness for others in your situation.