The Toll of Eczema & Topical Steroid Withdrawal
There is a certain physical, emotional, mental, and even spiritual toll that affects those dealing with any chronic health condition. But to me, the visibility and extremes of skin conditions are a whole other beast.
I feel like dealing with atopic dermatitis my whole life and going through topical steroid withdrawal for the past 8 years has taken a HUGE toll on me in every way. As I bear through another horrible flare in the recent months, I'm reminded of how painful it truly is – in more ways than one.
I forget how bad it can truly get
In between flares, when I'm doing fairly well, I often think back to the times in my life when I had suicidal thoughts and felt extremely low. I wonder how I could have even felt that low to think about it. But when a flare hits me and knocks me down again, it all comes flooding back. The hopelessness, the fear, and the depression – everything comes flooding back like it never left. Being in physical pain and discomfort is a big part of it. However, the psychological toll is something else altogether. It's a different kind of beast to deal with.
When I'm in a really bad flare, some days, there is absolutely nothing that helps my state of mind. No amount of rest, meditation, music, writing, or anything else I may enjoy on a typical day can pull me out of my rut. In those times, when the agony takes over, all I can do is sit with it and try to be present with it. All I can realistically do is stay down when I get knocked down and then pick myself up again when I gather enough strength to do so. The problem is, I never know how long that will take. It could be a day, a week, or a month(s). My mind goes into survival mode, and all I can do is take it one step, one day at a time. Heck, sometimes even one hour and even one minute at a time.
You never get used to the pain and suffering
Some people seem to think that after dealing with it all for this long, we get used to it. But the truth is, you never get used to dealing with chronic health conditions. It literally feels like psychological and physical torture, and the longer it goes on, the harder it is.
Every time you start to see improvement and get back to living your life somewhat normally, you get it all taken away from you again. Every time you have to use your strength to get back up, you have to essentially start from scratch and rebuild – AGAIN. When this happens over and over again, it feels soul-crushing. There are no other words I can use to describe it.
In those times, when I felt like I took a huge kick to the gut by the universe, those thoughts of not wanting to be here anymore came back. I can't help but wonder if life is just suffering and pain, then what is the point? What is the point of even being here if I just have to suffer and get knocked down over and over again?
The exhaustion runs deep
In all honesty, there are no words to describe how exhausted I am. This journey is extremely tiring altogether. Every day feels like a battle, whether it's a familiar or new one. I am extremely exhausted from trying different treatments and healing modalities and being let down. It's exhausting to think about my skin and other health issues every day – for nearly 24 hours a day.
I know that there ARE things in life that make it all worth it, and there is so much to be grateful for, and it will pass again. However, that doesn't change the fact that sometimes...well, sometimes it just plain sucks.
In those times, all I can do is hold onto any light in my day – whether it's a cup of coffee or tea, a conversation with a friend, a good movie or book, or anything that gives me even a small amount of joy. All I can do is breathe it in and hold onto it for dear life so I can get through to the next day.
It's Eczema Awareness Month! Have you shared your eczema story on AtopicDermatitis.net?