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Growing up with Eczema

This is a post from a young Eczema sufferer, who shares her experiences Growing up with eczema. We don’t like to put words into peoples mouths so we have left this message exactly like we found it. It’s the painful truth and sometimes we hide away from the truth about eczema. Many companies and magazines will try to make out that DRY SKIN is the same as eczema and say stupid things like ‘Cure eczema in 14 days with our lotion and cream’ In our opinion you can only manage eczema at the moment until science has found us a cure. At the moment we can just manage it until a cure is found. See our article on Latest eczema research 2017-2018 which we published recently.

Growing up with eczema

(Because everybody thinks all we have to do is put on lots of lotion and not scratch)

  • waking up in pain with blood all over your sheets
  • being afraid to go to sleep because you can’t control your scratching when you’re asleep
  • having to do your laundry all the time because dead skin cells are everywhere
  • everything burns in the shower, even when you use cold water
  • no hot water: no hot showers, no hot tubs, no hot springs
  • not being able to go on sleepovers or travel to certain places because you can’t pack your humidifier or air purifier or the climate will fuck you up or there are just too many allergens there
  • if you ever do feel like going anywhere, having to pack your entire medicine cabinet (gauze and bandages included)
  • having to be careful with anything you put on your skin: makeup, lotions, etc…
  • clothing: as a child, cotton only – no jeans, no polyester, nope
  • when eczema breaks out on your face or any visible part of your body, and people are afraid of being near you for fear of catching some horrible disease. also people just straight up staring at you
  • hiding at home because you feel like the ugliest person in the world
  • not being able to wear short sleeves or shorts because you’re afraid of people seeing your scars
  • the only medications that work have horrible side effects…like topical steroid withdrawal or increasing the risk of skin cancer
  • being the really annoying friend with all the food allergies
  • not being able to exercise when you want to because you’re allergic to your own sweat or your joints are too inflamed to move
  • not being able to cry because your eyelids might break out
  • landing in the hospital because of life-threatening skin infections

Thank you to ‘unfinishedsimphonie’ ( she wanted to remain anonymous ) so this is her Tumblr username, for your honest and truthful words. We wish you well and hope for better days for you. x

These are the issues eczema sufferers go through each day, these are her words and her thoughts. If everyone understood how hard it is Growing up with eczema, things we would be much better for so many people. Eczema is half about the physical conditions and treating them and the other half avoiding issues related to eczema, like the ones listed above.


Talk to children about eczema

Eczema not only affects the person or child suffering from the condition, it affects everyone living in the same household. It can be just as troubling for the parent to watch their child in so much pain, and also for their siblings to watch their younger brother or sister having to go through so much. Make sure everyone in the household is informed and ready to live with the condition for the long-term. There’s no quick fix for eczema and everyone should have hope, but also a realistic perspective on the condition. If you beleive your children is struggling to live with someone who has eczema and you’re finding it difficult to talk to them, please seek proffesional help. Helpful organisations such as NATIONAL ECZEMA ASSOCIATION can be a lifeline when you’re struggling. There’s no shame in asking for help, you’re not the first and you certanly won’t be the last to admitt you’re struggling. We published an article recently from a mother who really struggled. Read A Mothers eczema story.

Get siblings to be your eyes and ears

My personal experience with siblings in the household was a positive one, It’s my older son who has eczema and his younger brothers were all very helpful in caring for their older brother. I can’t tell you how many times I have heard the words ‘ stop scratching! ‘ then my youngest son would come and let us know he was scratching. We all know if you don’t try and stop them scratching it will only lead to infection or a flare-up. His brothers were like our eyes and ears, which I’m sure stopped many irresistible scratching sessions which could have turned nasty.

They were also helpful when our son was feeling down and didn’t let us know, They would come and tell us and we could deal with the situation.

When our sons skin was infected, they would try and distract him from the pain and suffering by playing games and talking to him whilst we creamed his painful areas. I don’t think they totally understood how painful his eczema was and still is. Only someone with bad eczema can know how painful the conditon can be, but they certainly witnessed him when he wasn’t at his best and they could see the pain and suffering he went through.

We found it really helpful to read to our younger son about Eczema and we found some amazing books on AMAZON to help with this. The book below was invaluble and really helped my youngest son understand why his brother scratched.

Priced at just £6.82 on AMAZON UK  & $12.12 from AMAZON US

Separate towels and products

Having a plan and routine in the home will also help control the condition, and making sure everyone knows the plan is important. Having separate towels as an example to help reduce cross contamination and bath toys and sponges kept separate. Talk to the family and explain why these things are so important, remind them of a time when your child had an infection and say you’re trying to avoid that happening again by not sharing towels and clothes ETC.

Spread the love

Caring for someone with eczema can be very time consuming, Creaming, Bathing and changing bedding and clothes every two minutes can be overwhelming at times. Creaming alone can be twenty Minutes, four or five times a day, But remember you have other children in the house and they also will be craving your time and attention. Understandably your focus will be to care for the child suffering the most, just remember to share your time and plan quality time with others. Thank them for all their help and patience and spend some quality time with them, and make it all about them. If the siblings are older it’s easier to explain and I’m sure they will understand, but with younger siblings it’s very difficult to explain why you spend so much time with your child who suffers from eczema. You will however be amazed at how much they pick up and understand. Children are amazing at picking up and sensing issues around them, they will learn quickly and being open and honest with them will only be beneficial in the long-run.



I have a story to tell

How has eczema affected you growing up?

We would love to hear from you and share your experiences with others. Sharing is caring and by reaching out to others you can help some many people. Please contact us below if you would like to share your story.

Here’s another helpful book we found on AMAZON if your child has suffered from Bullying due to their eczema.

Priced at just £7.88 on AMAZON UK

Priced at just £10.88 on AMAZON US

 

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