Ok, so we have discussed, read, talked about, been taught and researched information on the the physical side of eczema but what about the emotional side?  Here is one persons personal story. If you would like to add your story to this page please feel free to
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Eczema-How it effects the Big People
By: Fleur M.
April 2007 

The emotional side of eczema is not often given attention by the medical world. So to that end, below is a rant about the different emotions and coping strategies I have experienced in my 5 years as the Mum of an itchy kid. I share this in the hope that you can all identify with some or all of this and that you will know you are not alone in your feelings. 

Eczema drives me nuts!!!! I hate that my child has to endure the physical pain and discomfort. For a long time I just got on with doing what had to be done without thinking about how my son must feel. I could not let myself dwell on it or I knew I would be overcome by grief. But as emotions are want to do, it did catch up with me one evening during a wrapping session. My son was about 2 years old and it had been a battle to do the wrapping as he was so itchy. I was hot and bothered. His skin was terrible the wrap process was long and fraught. I could only calm him by rubbing his back. He lay on his tummy on the floor with his bum in the air. He fell asleep from exhaustion. I looked at his red, lumpy skin and just cried for him. I looked at my husband and said “My poor baby” I grieve for his loss of normal skin, for the loss of a normal carefree pattern to life. I grieve that he has to endure stares in the supermarket and nosy but well meaning strangers asking about his skin. I grieve for the extra load he has to carry in life. 

I hate what eczema does to me as a person. I am grumpy, I yell at the kids, I end up letting my son get away with more than he should discipline wise even though I know it’s not fair to his sister. I take out my tiredness and exhaustion on my family. I also get angry with him and then feel guilty. When he itches I say ‘don’t itch’ when I know it’s the worst thing to say. I feel angry because I have worked so hard to get his skin to a better state and in one minute of scratching he has undone a weeks worth of hard work. Anger makes me tired too. 

I often feel hopeless and like I am beating my head against a brick wall. Nothing is making his skin better. He still flares, he still itches, he still wakes several times a night. I worry I don’t do enough, work hard enough at his eczema, don’t search enough for answers. It is relentless. The chronic nature of eczema can be depressing. It is hard to see a light at the end of the tunnel. 

Eczema affects my marriage. At the end of the day being a parent and dealing with eczema has sucked the life out of me. I have nothing left to give. My husband and our relationship is way down on my ‘to do’ list. It shouldn’t be. I feel guilty. 

Sooooooo what does one do to cope? Well for me, I have close family who help out with the practicalities of life eg) My Grandmother bakes us allergy free cookies, My Mum baby-sits to give me and hubby time out, my husband is a hands on Dad and is very patient. I seek medical help when needed. I am blessed with a fantastic GP and often speak to the eczema nurses for ideas and guidance. I also work on not fighting the eczema monster and get on with dealing with it. A certain amount of acceptance of the status quo as had to happen. Work with what’s happening today and not look too far into the future. Be as informed as I can be but don’t overload myself with information. Be kind to myself and lower the expectations of what I can achieve in a day. Let go of the guilt, it’s not useful. It only uses up energy that I could use for other things.  

I try to heed the advice of my elders. My Uncle told me a bit of advice. He said “You know how on the planes when they go through the safety drill and tell adults to put the oxygen mask on themselves first and then children, it’s the same in life.” I have to put the oxygen mask on myself first if I am to be any use to the kids. For me at the moment putting on the oxygen mask is making time to go to the gym, leaving the vacuuming in favour of a quite coffee and a chat with a girlfriend or going to an art exhibition while the kids are at school and not feeling guilty about it. It’s meeting my husband in town for lunch. It’s also knowing that I can’t be a super-person and no one expects it of me. 

My son has always been good at telling me what he feels about eczema “I hate eczema” “It’s not my fault, it’s the way I was born” “I hate my life, I wish I had her life” It sure does pull at the heart stings BUT I think he has come to some kind of understanding and put things in perspective himself as evidenced by his this “Mummy I love my life, I just hate the bit with eczema in it”