Meet Carlie F. – Tennessee
This story includes a reference to self-harm, which may be distressing for some readers. Please take care if this topic may be triggering for you.
I wanted to make something for May which is the start of Ichthyosis Awareness Month as well as Mental Health Awareness Month. For me, these go hand-in-hand. I will talk a little bit about my condition (Netherton syndrome), but not in the way that most people will want to intertwine them. Something I’m very passionate about, which is mental health awareness and I would like to share my mental health journey pertaining my skin condition. (PS, please bear with me. I do have dyslexia and yes, I am proofreading. However, I may miss something.)
My skin condition called Netherton syndrome is what causes me to appear pink have dead skin cells all over that are visible and part of the reason why l have little to no hair. This condition has also caused me to be in and out of the hospital a lot, which can greatly affect my mental health.
You can also affect your thoughts about your own appearance. For instance, if l’m having a flareup where my skin is a little more pink than usual and has more scales than usual, I will feel a little more insecure; versus days where my skin is calm and happy.
Unfortunately, stress does affect the calmness of my skin. So, if I’m very stressed, my skin will be bad and if my skin is bad, I don’t feel confident which is not really a good combination if you’re trying to maintain a positive mindset.
Another unfortunate side effect is on flareup days. I can also feel quite discouraged when my skin is flaring up and it’s sore to the touch. Thankfully It doesn’t happen that often. But if I am sore, I can’t really move around a lot because it hurts, which makes me feel extremely useless and kind of a failure because I’m thinking well I could do this yesterday. Why can’t I do this today?
There are many days where I’m very happy about my skin condition. I love being my favorite color pink. My skin tone goes great with silver and gold, so l don’t have to worry about finding the right metal if I like a jewelry piece. I’ll just buy it and wear it because I know it will look good. I look good in almost every color. Also, I don’t get bit by mosquitoes, which I always flex on because why not lol!
However, even though there are multiple things, I do enjoy about my skin condition, a lot of the social aspect is not enjoyable.
For example, I have been physically grabbed in public just to be asked if l had a sunburn. I have been followed around a store for quite a long time too. You guessed it, just so they can ask if l had a sunburn. I’ve been interrupted in meals to ask what’s wrong with me. I’ve been pointed at and literally laughed at like they do in cartoons so you can imagine the social anxiety goes crazy some days.
Just like my skin condition, my mental health has good days and bad days. This goes for anybody with mental health issues. You’re gonna have good days and you’re gonna have bad days. It is a roller coaster and it is OK to not be OK. I know it’s very cliché to say this, but it’s very true.
If you or a friend or loved one is struggling with mental health or self-harming thoughts, please reach out to a trusted individual. I know it’s hard. I know it’s embarrassing. I know you’re thinking well, what if they don’t believe me. I know your mind is trying to tell you that you’re doing it for attention, especially if you ask for help. But don’t worry, I have been there. I know. But please trust me when I say this it’s better to get help and deal with it on your own.
You are beautiful you are loved you are cared for. The Earth is better with you in it. You matter. Just take it one day at a time, one hour at a time, one minute, one second, whatever you need just stay. Love y’all so much!
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