‘My Itchy Journey’
by Ruth, County Tipperary
I’ve had eczema since I was six months old and wow, it hasn’t been easy. Although I hate to admit it, even now I’m looking down at my legs and realising how sore they are!
Through all the pain I always forget to thank my parents and my sister for listening to my screaming, shouting and complaints. To be honest, school life hasn’t been much easier. When I was younger, I would wear bandages in school and try to hide them under my sleeves so no one would see. Even when we had to hold hands for yard games, I’d worry or feel like someone would think my hands were disgusting. Sometimes people would ask me what the red spots were on my legs, and I would enjoy telling them about my eczema so they would understand, but some others would look at me and whisper to each other that I have chickenpox.
Then, to my surprise in second class a new girl joined my class who also had eczema. I didn’t feel misplaced anymore. Unfortunately, though, at home it wasn’t that good! The second my mother would tell me that I had to do creams or have a bath/shower a tear would always come rolling down my cheek. My family are always so supportive.
Swimming is hard since all my friends know how to swim but I until recently, I didn’t because my skin would always prevent that. In 3rd class I found out the class would be doing swimming lessons. I told my parents, and I then started crying.
In school I go out for cream breaks with an SNA twice a day which is quite helpful. I also must wear my track suit instead of my uniform a lot which usually made (still does) me feel self-conscious.
When infected, I have to take antibiotics – one; a gross banana or pink medicine and two; the most disgusting tasting steroid medication ever known to man!
I have tried everything. I use steroid creams regularly. I have to have a lot of baths (sometimes with Milton bleach in them, which can sting) At this exact moment I am wearing zinc bandages on my feet which were an amazing buy!
Something that a lot of people don’t know is that when I have open wounds my clothes stick to me, so it’s very painful when I have to take them off. The same thing happens with bandages as well. That means that sometimes I’m left with the option of having to wear shorts in desperate weather.
Now, although this is a bad thing there is a bit of a silver lining in this situation! You see when my skin is flared up, I don’t feel the cold as much as others would. We must be careful where we decide to visit for summer holidays because if we go somewhere too hot then I will practically die of the heat and then I get itchy and then it’s so sore when I get into the pool!
Last month we took a lovely holiday to the beautiful country of Lithuania. It was quite cold there so obviously they would have the hotel heating on. I was wearing short sleeved pjs, no duvet and with the air conditioning on at full blast still feeling boiling hot, yet when my sister would come into the room with long sleeved pjs on, she would start shivering with the cold! This is because my skin is so inflamed.
Nearly two years ago I started on new medication. It stops your immune system from being hyper (which is part of what causes eczema) I frequently had to go to the hospital for blood tests, which I absolutely hated. I took this immunosuppressant once a week-on a Friday. It made me anxious and so tired for the weekend that I regularly missed out on doing things, going to matches and parties. Did I mention I play camogie, soccer, I play the violin, I do athletics, and I also do gymnastics? I did a lot of writing when I was on this medication. I adore writing creative stories and I am in the middle of writing an amazing story at the moment!
Unfortunately, even though it works for others, this particular treatment did not work for me. But the nurses told me there was other pathways to help me. I just had to find the right path for me.
In 2023 we had a big success with my skin. It was called light treatment. It started with going on Mondays, Wednesdays and Fridays which I didn’t like because I couldn’t meet my friends on Fridays. Light treatment 100% worked but unfortunately that didn’t last for long. Light treatment wasn’t a bad experience. The nurses were so nice, but it just took up so much time. I pass the hospital when I’m on my way to athletics, which I can thankfully do now because my skin is good enough.
I don’t know why I felt so delighted when I found eczema in my Irish dictionary. It’s ‘eachma’ just in case you were wondering.
I try not to complain about my skin too much because there are people in the world who have way worse conditions. Although most of the time I can’t hold it in, and it all just has to come out.
Now I’m going down another path to help me, I’ll be starting a treatment, which is a biologic (injection), which I extremely don’t want to do because I have to get a pen stuck into me. My dermatologist said it’s like magic though, so I want to try it.
I dread all my hospital appointments, but they’re good for me. All the nurses are really kind, and I do know they are just trying their best to help me! I hope this path works for me.
When I was younger, I used to always say “Why me?” but now I know that I have eczema because I KNOW I can handle it. When people complain of a paper cut stinging on their hand, I just stare at them and think, “seriously, look at me”.
This has been my eczema journey. I’m only ten years old. I’ve tried lots of paths on my journey and have had lots of good days and bad days. I’ll keep going and I will keep trying to find the path that helps me most.
For anyone that has skin conditions and is having a hard time:
1. You’ve got this
2. Friends and family are there to support you
3. Listen to what your dermatologist advises
4. You look as good as ever
5. Who cares if people stare
6. It only matters what’s in the inside
7. Breathe if the pain gets too much
8. Be confident
9. Crying helps get the feelings out
10.Remember: God knew fully well you could handle it
YOU ARE NEVER ALONE!
BY RUTH 10 YEARS OLD
If you need guidance or support about managing eczema or a skin condition, contact the Irish Skin Foundation’s Ask-a-Nurse Helpline
