“This is the most impossible condition to explain to people because you see what’s going on on the surface, but you don’t see what’s going on underneath the surface.” – Janelle Norman, Preventable
I am in awe that one year has passed since the launching of my documentary — of our documentary. So many voices and stories coming together in one film to share about the hardships and the emotional rollercoaster that is Red Skin Syndrome/Topical Steroid Withdrawal.
When I look back at all the work that was put into this documentary, I still wonder how it all got done. But then I remember all the loss we experience through this, and the pushing through, and the loneness from not finding any doctor who believes us, is what fueled this entire operation.
I still, to this day, have a very hard time watching this movie. By now, I thought I would be officially healed, living out an active and care-free life where every ounce of my time would be productive and filled with building the best future possible. That is sadly not the case. As I write this, I am bandaged, frustrated that I am in yet another flare of unknown origins. My skin is painful, and all I can hope is that, whenever this documentary is shared, it will spare someone the heartache I still feel from this condition.
This COVID-19 pandemic hasn’t helped with the PTSD either. I am petrified of getting sick, and I hate feeling like I have no control over anything. I now have all of this spare time (it’s officially my spring break) and instead of using it to try out fun in home work outs, or wake up happily at any hour I wish, I am petrified of what pain I will be in come morning, needing to pick and peel at severely aggravated skin, and will end up being inundated all day with images and videos of beautiful women who have killer bodies and perfect skin doing things I wish I could do, but instead, only get to dream about. I hate being trapped in this body. I always try and keep a positive mindset, but feeling like a burden to those I love around me and not being able to do anything I truly want to do at the moment really can get you down.
This is why I am so passionate about spreading awareness. No one deserves to feel like this, to have their life turned upside down with no true professional help or answers as to when they will get better. Some get better faster than others, and no one can tell you what they did to factually get them better. Every journey is different.
If you or anyone in your life has eczema, please share this documentary with them. Knowledge is power. Spread awareness.
And for the love of every human being, STAY HOME. This COVID-19 virus is no joke, and people with TSW are immunocompromised. We do not need to play Russian roulette with how badly the virus will be on us if we catch it. Keep distance and continually use all safety precautions necessary to ensure you’re best bet at not catching the virus.
Love, B. R. Banos