I think it’s important to talk about all aspects of living with a chronic illness. I struggle with the term chronic illness in relation to my personal experience with eczema as I often downplay my symptoms and seemingly cope really well with the cards I’ve been dealt. For a lot of my life that is true, I’ve always been good at picking up the pieces and getting on with the day. I feel a lot of time that I ‘can’t complain’ because it’s ‘just eczema’, many people have eczema so I should just carry on as normal. Eczema seems to be a universal experience and from the conversations I’ve had with people who also suffer with it, I relate so well to their physical symptoms of itching and burning skin. But everyone copes in different ways and this is what I’m starting to unveil in my day to day life.
Currently my skin is relatively stable. I’m coming to end of months of UVB therapy which hasn’t been the easiest journey but has helped in some ways to give my skin a chance to rebuild itself and become stronger. I’m struggling with unknown contact allergies that set my skin off without warning which then leaves me in a place of fear of going back to a dark place with my skin.
I’ve noticed these circles and waves of emotions coming up recently, I don’t know where it’s all stemmed from. At first we thought (we being my boyfriend and I) that it was my new asthma medication but I took a break and the feelings remained and then we thought the classic time of the month but that comes and goes and the feelings once again remain. After many conversations, Nick made me aware that dealing with eczema has been a stress in my life for so many reasons and sometimes quite a traumatic experience.
I remember clear as day the facetime’s with Nick when I was back at university in floods of tears because of how broken I felt both physically with my skin and mentally from the trauma of getting through the day. There were times when he visited and would be on hand with tissues to wipe the tears and ooze from my face and be there as my comfort blanket. It’s been well over a year since this period of my life and I just moved away from it as quickly as I could because that’s what I felt was best to do, to just accept that yes I have suffered and not dwell on the situation. But I actually feel that this started a spiral of worry in me, it took one bad flare up in my young adult life to set off this constant cycle of will I be like that again? Will there be any warning if that happens again? What’s going to set me off?
It’s also so easy to say “but don’t worry about that” or “you’re in a good place right now, don’t think about that” and I agree but when you’re in your head about something and you get sucked back to that time when you felt there was no end in sight it’s hard to bring yourself into the present moment.
I think a common misconception of an eczema sufferer is that when their skin is going through a stable phase or they aren’t in flare, that the worries have gone entirely but this is quite far from the truth. Managing a condition with no cure is mentally challenging. We don’t get a day off, even on the smooth skin days. I often get cocky and don’t apply moisturiser consistently during these times but this leaves my skin barrier compromised without me realising and slowly the dry skin increases and then it’s too late and a flare sets in. It is a constant balancing act. The fear of coming into contact with an unknown allergy is stressful at times and usually unavoidable.
I get conflicted thoughts when I write honestly about my experiences as it can sometimes feel like I’m trying to find sympathy but there is no avoiding the truth and from an awareness stand point I think it’s so important for people without eczema to realise that it’s much more than a visible rash. And those who do struggle with the day to days of it need to know that all feelings are valid and that they need to be felt and not ignored. Suppressing emotions or downplaying the way it affects you might be ok short term but long term this isn’t sustainable and may have a knock-on effect on your skin. Also, comparing your journey with someone else is easy to do, especially with the instagram eczema community. I’ve found myself not wanting to be open about something because I didn’t want people to think that I was dramatising it. Instagram has become a safe space for many of us where we share our experiences and find comfort in knowing we’re not alone and just because someone is seemly visibly worse than you doesn’t mean your smaller flare up isn’t impacting your life less.
It’s safe to say I’m going through the motions of this inner conflict of “my skin is good but” and it’s proving tricky to shake off. I think the fear of finishing UVB and being left to my own devices is playing on my mind both consciously and subconsciously despite it not being an easy journey to be on. I’ve been teary everyday this past week just from the build up of emotion inside of me and it’s been a good way of letting it out and moving on. I’ve had a constant what if in the back of my head and it seems my mind can’t take a day off even when my skin is under control. I guess this is the most open I’ve been on my blog and it’s actually been a nice sense of relief whilst writing it, something I feel I needed in order to rationalise my thoughts.
If you feel the same then just know you’re allowed to have your down days even when you might have it all under control. Our bodies have been through a lot of stress so adding to it by suppressing the mental side affects won’t help in the long run.