Someone on the support group the other day asked us to describe what severe eczema does to your life and your family. The only way I can answer this is to say that eczema becomes your life, and even when the skin is healthy you’re always slightly on edge, waiting for it to swallow you up again.
You can’t sleep; you get stressed; you can’t concentrate; you lose the ability to process information and learn; you struggle at work; when it becomes too painful to wear clothes you have to take days off work; you don’t eat enough (I used to get itches so bad that they made me nauseous); you have a short temper and snap at those you love; you become a hermit; an invitation to a social event seems like the worst news in the world and so your friendships suffer; even if you do go to an event you end up talking about your skin the whole time; you dread going to places where your photo will be taken (after 4 years of hard work, my graduation photo was ruined by swollen eyes); you cry every day; you can’t move/walk properly; you can’t bathe without screaming; you stick to your clothes and bedsheets; you have your whole family on standby (even when you don’t live at home), also sharing your anxiety and pain; your heart bleeds (non-sarcastically) when your parents blame themselves for your genes; you suffer social anxiety from people staring at your wounds, bald patches or dandruff; you waste £100s, even £1000s, on medicines, professional advice and “miracle cures”; you’re forced to act grateful when people off the street tell you the exact cause and cure for your eczema like you’ve never thought of bathing in Oilatum before; you have sex with your clothes on, if at all, both because you feel you look disgusting and because it hurts when he touches you; you lose all confidence and try to blend into the shadows; you don’t feel like you even have a personality anymore; you’re terrified that your sibling might suffer the same; you can’t see hope and your life is a complete misery.
So for me, there would be few medicines out there that would be too risky if it meant a return to a good quality of life – that’s why health economics is run by QALYs (quality-adjusted life years), not life expectancy. Just because you won’t die from eczema (although you could potentially die complications such as sepsis, suicidal thoughts or MRSA), don’t assume it can’t ruin your life.
Finding Dr Aron has, in that sense, saved my life. Of course, there are risks and progress has not been entirely linear, but am I happy? Absolutely. Do I see a way of ending the pain without jumping off a bridge? Hell, yes. Does this give me a plan for eventually coming off all medicine (whether that be in a matter of months or years)? Time will tell, but it’s looking very positive!
I’ve come a long way…
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