I loved this blog post by Deborah Cicurel for Metro.co.uk, “17 things you’ll only know if you have eczema”. It made me smile because I do most of those things and because it’s good to smile about our trials and remember that we have this condition but it’s not so bad. We get by with our strange habits and coping mechanisms.
So here are a few of my own… any of these sound familiar my eczema buddies?
- You scratch in private
Really anywhere will do. My favourite place is the toilet. I know, I know, it’s gross, but you can quite legitimately excuse yourself to visit the bathroom, even when you don’t need a pee. Once hidden you can scratch that itchy bit in private. Oh OK, you can remove your clothing and scratch all over. And I know I should always avoid scratching and try to ignore the itching and develop techniques to distract myself but I do love a good scratch. It feels so damn good. Why does it feel so good?
- Are you asleep yet?
You have perfected the art of working out the precise time your partner has fallen asleep so you can stealthily scratch in a rock-the-bed-frenzy without waking them and getting moaned at to keep still… If you do share your bed that is – I guess if you don’t, you can scratch to your heart’s content with no one nagging. Ah what bliss… though weirdly I find I actually scratch a bit less when I sleep on my own. Am I allergic to my own husband? or is it his extra heat that tips the balance?
- We can survive on very little sleep
Years living with eczema proves you can survive with very little sleep. It aint great fun or very healthy but nighttime is the worst time for eczema – or the best time depending on how you look at it. If eczema was a nasty bug or a virus or something it would be in its element in the dark hours because eczema loves the witching hours. So when we look a bit sleepy and dry and red and itchy, have a heart. Cut us some slack. We’ve probably been sleeping on our hands all night trying to count tubs of epaderm jumping over fences to get to sleep.
- When you wash the sheets you have to scrub blood stains first
Blood on the sheets is just part of living with eczema. It’s gross and it disgusts me, but it happens. So when it comes to laundry day it takes twice as long because every mean little blood stain is glaring up at me, exposing my weakness and screaming my sin. The bedding must be treated with stain remover and pre-soaked to within an inch of its life to ensure no trace of horrible blood is left after washing. Sheets must also be washed on 60 degrees or higher, both for the stains and to kill any dust mites and their leavings.
- Every day we must cream ourselves regularly
Not just once a day or even just twice a day, this little ritual must often be repeated during the day. We need to find a quiet, private place and moisturise those sore, painful bits of eczema that just seem to absorb so much and gain so little from each application. Apologies for the slightly odd phrasing, it is the in joke in our house. It is a bit rude but it does help to make light sometimes. “Need a hand creaming yourself?” Why yes please darling. Too close to the mark?
- We have low self esteem
If you have eczema anywhere on your body it’s unsightly as well as being uncomfortable and painful and itchy and all those other things. I think it will always be with me, even on good skin days, I am still that girl. The one who doesn’t think she looks good, who cannot feel sexy or feel at home in her own skin, in her own body because it’s not the one she wanted. I didn’t ask for any of this. Can I give this thickened, scarred rubbish skin back now and have the new one I should have got when I was born? The voice inside my head is far unkinder than anyone else. And even when the eczema is hidden I know it’s there and I fear ever showing that part of me to anyone, even my husband. Because I am ashamed of it. I want smooth, unblemished skin that gleams with youth and vitality. There are those days, but despite all this we need to learn to live with it. To realise that life is too short, we are not defined by our skin. How we look really doesn’t matter, although that is hard to comprehend in the material self absorbed world we live in. That is what I try to teach myself every day, especially when it’s bad. And girls – men really don’t care if you have eczema. Everyone with eczema out there – it never looks as bad as it feels. Trust me.
- Never leave home without emollients
Even a short visit to the pub must be made with a small tub of your chosen emollient. Longer weekend trips require larger tubs because with really challenged skin you require quite a lot of this greasy stuff to function. A week or longer and you need the whole 500g tub so you can wash and moisturise with it. It makes your suitcase a little heavy with all the other special skin care products that need to go; aloe vera, tea tree oil, coconut oil, steroids, protopic blah blah blah…
- Clothes and bedding get really greasy
Normal low temperature washes don’t quite get out the blood stains or the gloopy deposits that our emollients leave on our clothes and bedding. It’s pretty gross and everything really needs to be washed on 60 degrees or above to remove it, or so I find, depending on how gloopy my skin needs to be. Winter is great because sacrificial vests, tights and leggings can save your trousers and tops from getting too bad so you can wear them a few more times before washing.
- You love meeting someone else with eczema
That doesn’t mean we would wish this awful condition on anyone but it always seems that so few people actually understand what it’s like that to meet a fellow ‘secret scratcher’ is fantastic. You can compare reports on which emollients, shampoo, soaps you find work best, discuss what steroids or treatments you’ve had and all the other crap you’ve done that never worked.
- You don’t like asking for help applying emollients
It would be lovely if I could ask my husband more often to help apply the emollients and ‘stuff’ as I used to call it when I was a kid. But I just don’t like to ask. I find it easier to manage it myself but this can make you feel very alone and while the other is nicely curled up under the duvet you are still sitting, shivering at the dressing table making sure you are sufficiently lubed up to last the night without your skin getting too dry. It’s not romantic.
To those of you who don’t have eczema, this is a snapshot of what it’s like.
So my little fellow scratchers, what have I missed?
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