The Truth about My Mental Health & Healing
Now that I’ve been actively healing for a little over half a year, I can say that the hardest part so far was during the first few months of this journey. This is probably my most telling story yet, even more so than my first public post about healing. I had to ensure I reached a mental and physical place that allowed me to revisit, by far, the most traumatizing time in my life. But, while difficult, I feel compelled to share this story for the thousands of others going through topical steroid withdrawal (TSW) themselves, that wake up every morning feeling like they hate their lives, and like there is no way in hell they can heal from where they are now… Because that’s how I felt too. While I still have a lot more healing to go, I’m glad to share that I’ve worked hard to heal my mind and body and to reach this space where I can now share this story.
To understand the mental and emotional hardship I faced, you have to understand what happened to my body. With TSW and healing eczema naturally, it’s a popular mantra and a known fact that “It gets worse before it gets better.” But this isn’t one of those lighthearted motivational sayings to remind you to keep your head up, kid – We really mean it can get seriously, physically worse before you start seeing any semblance of normal, healthy, human skin where your eczema used to be.
As eczema heals naturally, it goes through phases. Sometimes it’s red and raw—so inflamed and painful that you actually avoid showering and washing your hands when you can, because plain water burns too much. Sometimes it’s cracked and dry—so much so that you try not to look down at your body or into a mirror, because you just get too grossed out. Sometimes it’s thick and leathery—so rough that you avoid physical contact with anyone else, because you don’t want to shock them with what your skin feels like. Sometimes it’s very tight—so you can feel your skin stretching with every tiny move you make, because it has zero elasticity. Sometimes it even gets scaly… Yes, scaly, like the molting skin of a snake.
My skin went through all of that and more. There were so many times that I looked down at my disheveled, healing hands and was at a loss for words. I felt sheer terror run through my body, with tears welling up in my eyes from what I saw. Was that me? How could it be me? It doesn’t even look human... What’s happening to me? I had all these feelings of intense worry, anxiety, fear… Then I was somehow supposed to go about the rest of my day like a normal person. And then do it all over again the next day, and the day after that.
Then there’s the itchiness. Oh. My. God… The itchiness. Sometimes it’s near indescribable, except through flowing tears of pure frustration, distress, and eventually, physical exhaustion. I’ve never had the chicken pox, but that’s what I imagine it’s like. Except imagine you have the chicken pox every single day of your life. And then, for months and months and months.
You learn affirmations and other coping mechanisms that do help to some extent (sometimes) but other times you get swallowed whole by the pain and distress the constant itch causes. I’ve had countless mental and emotional breakdowns from the itchiness alone.
Most recently, I was caught in a bad itch attack while getting ready for bed one night. I just happened to ask my boyfriend, “Hey, what time is it?”
“9,” he said.
And then it hit me—the itching. And when that happens, it immobilizes you.
You try not to scratch, but you have to scratch. You repeat your affirmations and healing mantras to yourself… “I’m ok. I’m strong. I can do this.” You wish so hard you just weren’t itchy anymore and that this wasn’t happening. You pray to your God for it to just please stop. You can’t hear or think of anything else.
Again, I asked, “What time is it?”
“10,” he said.
I burst into tears.
I could not believe it had been a full hour of this constant hell (and this wasn’t even the first time that’s happened). I was so tired. Tired of scratching, tired of being itchy, tired of being in pain. Tired of doing this every day for 6 months, and tired knowing there was no answer to “How much longer?”
When you’re healing, you get no break. People think, How about when you sleep? The answer is, We don’t sleep. At its worst, the profuse itchiness continues, even increases, through the night (when the body is naturally programmed to heal and detoxify). For months, it would take me about 2 hours constantly itching and scratching in bed to get exhausted enough to finally fall asleep. Only to wake up again an hour later from the intense itching, then do it all over again. By morning, I was lucky to have gotten a sporadic 4 hours of low-quality sleep.
My bed used to make me happy, especially at the end of the day. It used to be cozy; comforting; a relief, like it is for many people. But now, at the end of every inevitably long, draining day, I knew that getting into bed just meant another maddening, sleepless night of trying not to scratch myself bloody. Instead of bringing rest and renewal, trying to sleep every night just pounded me with intense fear and anxiety.
Over the course of a few months, physically watching my skin go through these unimaginably terrifying phases one after another, the unceasing itchiness day and night, and the huge lack of sleep gradually chipped away at my mental health until I was beaten down to a place I thought I would never be able to climb out of or even physically heal from. I’d wake up every single morning and lie in bed for hours in pain from my taut, dry, shedding skin. I’d lie there as still as possible, trying not to move a muscle, and already feel exhausted just thinking about having to get up and do life for another day.
In particularly hard hours, I’d ask myself over and over, “What did I do to deserve this?” I thought I was a good person… A pretty good friend, a good girlfriend. A decent daughter and sister, I think… What did I do to deserve this hell? Why is this happening to me? The mental torment piled on top of the physical until I was 6-feet-under. I was never suicidal, but there were so many times I just wished I didn’t exist. I wished I wasn’t on this earth, living this pain. I wished I was never born.
Not all days were so bad, though. Even when I was in pain with dry, itchy skin, I was still able to enjoy time with my friends and family now and then. But even at my happiest during that time, when I could joke and laugh and act like my old self again, there was always an underlying layer of something preventing me from truly feeling that happiness I was expressing to others. No matter how hard I tried to be myself, to feel as happy as I fronted, I couldn’t.
I thought about going to therapy. Many times, actually. But it was only ever a thought. I knew I could talk to them about my depression, anxiety, fear, pain… But as much as I opened up, I felt like they’d still never know what it felt like. And I just wanted someone who could relate for once… Someone who just ‘got it.’
Current Update on Me
2 months ago, I discovered and joined an eczema support group program for people just like me—withdrawn from steroids, healing naturally, and needing someone to just ‘get it.’ This group has been my saving grace, and I can’t thank them enough for how much they help, inspire, and encourage me to kick eczema’s butt and keep going every day.
I still have similar problems as before, but nowhere near as severe—thanks to the amazing strength and resilience of the human body and my ongoing effort to heal my mind along with it. Now, my skin is intact (for the most part) and I rarely get those deep, hard-to-heal cracks that used to be so common. I don’t wake up in a lot of pain anymore (although I’m still shedding a lot, which is good that it’s coming off). Instead of being itchy 90% of the time, now I’m itchy about 30% of the time. I’m getting much better sleep, but I’m still working on dissociating feelings of anxiety and fear from my bed and nighttime routine. Most importantly, I’m still working on finding my way back to me, on the inside as much as the out.
No matter your hardship, burden, or challenge, know that you have been assigned this mountain to show others it can be moved. If you find yourself asking, “Why is this happening to me?” That’s why.
There will always be someone who you can talk to; someone who ‘gets it.’ Even if they’re halfway around the world, know they exist. And know that whatever pain, anxiety, depression, and fear you might feel, you will heal, there is hope, and you have purpose—even if you can’t see any of it right now.