I came into this world with Atopic Dermatitis (AD).
I do not remember a time in my life without it.
I have experienced periods of remission but despite it being out of sight, it is never out of mind.
AD is a part of you as a whole — it is much more than skin deep.
I have moderate to severe AD that has ranged from covering 5-90% of my body. I’ve scratched myself with scissors, brushes and utensils. I’ve bled through clothes and sheets from scratching. Clothes have stuck and ripped skin from oozy patches or scabs. I’ve dealt with skin infections throughout my life, both fungal and bacterial. My face has been so swollen and raw that I couldn’t open my eyes. It has been truly horrendous at times.
When diagnosed with AD, dermatologists will provide treatment plans and some basic expectations, but these focus solely on physical wellbeing. There is a glaring absence when it comes to considering the other ways AD can affect quality of life. AD influences how you develop as a person. It becomes ingrained in every aspect of your life, intentionally or not. It takes part in shaping your identity. AD is a physical disease that wreaks havoc on all other parts of your wellbeing, especially your social and emotional health.
At a very young age, I became aware of my otherness based on my appearance. People treated me differently. Little children are sometimes unknowingly cruel and I dealt with stares, questions and outright exclamations of “Ew!” As a teenager, I had peers call me a leper. Adults have asked me if I am contagious. I’ve heard jokes that I must have a tic or be on drugs because of how incessantly I scratch. It is very difficult to cope with the knowledge that your appearance disgusts some people. Naturally I developed into an incredibly self conscious individual. After twenty seven years, struggle with how hypercritical I am of my appearance.
Because of my abysmal self-esteem, AD has of course affected my love life. I was always fearful of staying over a new partners house because I have my mandatory half-hour nightly skincare routine. When I wake up, unlike most people, I don’t just deal with the possibility of morning breath. I am usually flaky and crusty first thing in the morning. At what point do you trust a partner to look beyond those things? I still struggle with how they could possibly find me attractive when every dry, red, or flaky patch stands out like a beacon to me
My whole life, I have struggled to find myself beautiful. When I look in the mirror during a flare, I struggle to see beyond it. I don’t recognize myself sometimes. It is incredibly hard to deal with an immune issue like AD because you are fighting your own body and it often feels like a betrayal.
I am deeply grateful for the good days. On the bad days, I try to remind myself that I’ve been down this road before and eventually there will be some respite. I won’t say that a positive attitude fixes everything because it certainly does not, but it helps. I’m not bold enough to flaunt my flares and I may never rid myself of my self-consciousness, but essentially I try to ignore it so that I can live my life. I don’t hide my flaring skin in the house anymore because I’m tired of hiding. After wasting years of my life hating the way I looked and felt, I am finally starting to accept that AD is a part of who I am and it cannot be eliminated. I can manage it, but it is a chronic illness.
No matter what I do, I’m going to flare again at some point in my life. My best advice is to try to accept that you don’t have normal skin. This is not to say that you should give up your fight. Fight like hell and try whatever piques your interest to heal.
However, I suggest that you really sit with the fact that AD is a life-long war that you will be always fighting. You may win some battles but you will never end the war. You may as well live your life as you fight.
Don’t put things off in the hopes that maybe you’ll be able to enjoy them more when your skin is clear.
Enjoy them now, despite your patches.