What’s it like to be an adult with severe eczema? Jenny, who writes the brilliant blog I HAVE ECZEMA, explains that there is very little support available for adults.
As an adult sufferer of severe chronic eczema it’s often hard to feel accepted and to know that other people are suffering the exact same thing due to the fact that most people’s view of eczema is only from knowing it in its mild form. From having that stand point, I find many people don’t really understand just what people like myself are going through on a daily basis. I’ve had a number of people congratulate me on creating my blog because they have finally found someone who is going through the same thing as they are. This is of course great as it means that I’ve had people to chat about the various highs and lows, what medications to use, how they cope etc.
Of course we have fantastic resources such as the National Eczema Society to go to, but sometimes it’s nice to know that real people understand your woes and your need to get better to fulfill what could be considered a normal life. Not only this, but I believe that being honest and open about conditions, like I have with including images of my skin on a daily basis, and divulging the facts of how I have been forced to adapt and cope is also helpful in spreading awareness and even to act as a hub of information for other sufferers to gain some form of solace from.
I find many websites and even health services are more aimed towards children with atopic eczema and what parents should be doing etc. Where are the websites and services for those who have adult eczema? Eczema that only became a severe form in adulthood? OK, I understand that as an adult I don’t need creams to be applied and that kind of thing (well sometimes I do if it’s somewhere I can’t quite reach but I seem to be a lot more flexible now!) but I still suffer from the other associated things. I cry when it is too much to bare in terms of itchiness and soreness, I do get embarrassed about it when people stare and say things, I need to have many tasks performed for me in fear of exacerbating my condition and making it worse. When I’m in such a state I feel like an invalid. I need to be constantly reminded not to scratch and even have force used against me if I’m undergoing a mad scratching frenzy.
As an adult, I feel we need more support than ever. Being a child you’re under the care of your parent who pays for you to live; they pay the bills, ensure food is on the table and all those sorts of things that a child wouldn’t ever have to even contemplate because they are exempt from the grown up world. An adult with atopic eczema will have such a hard time, especially if others are misinformed of their condition. I have been very lucky that work understand to a degree that when I’m bad, I can’t come in to work, but that doesn’t mean that things like my end of year bonus and my sickness record aren’t affected by my inability to go in to work. It’s these little consequences that annoy me as generally I will find myself unable to work on the days that work falls, and by the time I’ve recovered enough it hasn’t even been a week and so I lose out on sick pay. Money that is necessary to fund my existence.
You may be wondering why I haven’t applied for benefits if this is the case. Well, in actual fact I have. But because my partner is working we aren’t entitled to anything. We have to live in the house we live in because it is modern, clean and large enough to fit in our possessions. But houses like this come with a higher price tag which we frequently struggle with some months. Don’t worry our bills are always paid on time but working in an overdraft every month isn’t exactly ideal.
If I didn’t have my partner to support me I’m not sure how I would cope and I know there are many sufferers out there who don’t have partners to support them. It is for this reason I feel that adult eczema should be more recognised. As I’ve said before, eczema isn’t always a little bit of itchy skin that can be remedied, it can be so much worse; a daily, weekly, monthly, yearly battle of trying to control and regulate. The skin is the bodies largest organ, so just take a moment to take in the fact that someone who is suffering quite literally from head to toe is going through a very tough time.