We all may be walking beside each other, but our stories are never the same.
Name: Katherine Spiech
Work: Clinical Study Assistant at MAPS MPBC (was about to go to medical school but had to put that on pause when I got sick)
Date of Withdrawal:
What type(s) of steroids did you use?
Unknown steroid compound/topical (~19 years), Desonide/topical (~1 year), Triamcinolone/topical (~1 year), Prednisone/pill and injection (rare, max twice a year depending), Flonase/nasal (~2 years leading up to TSW)
Are you on any other medication?
Do you have a supportive doctor?
What is/was your favorite comfort product?
Kirks unscented bar soap
What is the hardest thing you’ve had to endure during your withdrawal?
My immune system freaking out and me becoming hypersensitive/‘allergic’ to nearly everything (most food, medicine and topical products, certain airborne things, etc.). I lived like the boy in the bubble (more like girl in her 1 bedroom apartment) for about a year. Happy to say this is getting better as my TSW heals.
What is one thing you are grateful for during the withdrawal process?
How much closer it’s brought me to my body. I had been struggling with self-love, body dysmorphia and dissociation since I was a teen and I had my ah-ha/turn around moment at the peak of my worst flare. I realized how much of a blessing it is to have a body and be alive, even when in immense pain. My body is always doing her best to support me and I don’t think I would have fully realized that without this experience. Since then, I’ve shifted my focus to bodywork and in general, taking really good care of myself and my health.
How did you discover you had TSW?
In 2020, I started to first show signs of TSW when my ‘eczema’ began to spread to the rest of my body and face (I had been using topical steroids for about 20 years prior to this for my eczema). I went to different dermatologist for a second opinion when my face began swelling on/off for a month with a painful rash and he tested me for topical allergies.
We found a couple big hitters and he prescribed me stronger steroids and instructed me to start using Desonide twice a day on my face for as long as I needed to get rid of the flare. Overtime I steadily became more allergic to things. My skin was reacting to everything, the steroids weren’t helping and made my rashes worse. I began reacting to medicine in Fall 2020, food and other things in Jan 2021.
Eventually I learned of topical steroid withdrawal after a desperate google search and stopped all forms I had been using on 5/24/2021. It got worse before it got better, but all in all I’ve been healing ever since.
What were the first tell tale symptoms you experienced?
‘Eczema’ spreading all over to my body and face, facial swelling, needing stronger and stronger steroids, steroids no longer working past a certain point and making my rashes worse and giving me small acne bumps where applied.
What is one memory during the withdrawal that you will never forget?
Being naked on my couch alone in my apartment feeling like acid had been poured all over my face and neck. I remember crying hurt because the tears stung my skin so I couldn’t let myself cry. I called my mom screaming in pain. I was so scared and so tired, I don’t think I had slept more that 5 hours in the last 4 days at that point.
How is your TSW journey going?
Really well! It was super hard for the first year and a half, but I’m finally seeing a light at the end of the tunnel. My skin is stronger and thicker then it’s ever been, my immune system is calmer and I can eat and do more things now. I can move my body without pain and am able to sleep more. My ‘eczema’ is disappearing from spots that have never been clear of flare (e.g., crooks of elbows). It’s wonderful knowing that I have a chance at living a normal life again and I’m so beyond thankful that I’ve made it to this point.
If you had a call to action for the medical community, what would it be?
Research. Topical. Steroid. Withdrawal.
What was a pastime you used to help during TSW?
Body work (somatic meditation, mindful movement/exercise, nourishment, anatomical/biological research, pampering, etc.). That has helped the most, but there are times when it’s hard to be present in that way. When it gets to that point I like to play chess or watch relaxing YouTube videos.
What is something you wish to share with the community?
Topical Steroid Withdrawal is devastating. It may break you, but please know that if that happens it’s going to be okay. You may not believe it for a long time, but if you continue walking this path, eventually you will know this. Seldom do people get to experience something that causes such a holistic upheaval and immense removal of freedom – you will come face to face with your humanity. It becomes clear how short and fragile life is. The things you used to worry about/get upset over (bad traffic, a mistake a work, pimples) become such small things that don’t really matter anymore.
You become stronger and wiser. Pain, if you let it, becomes a friend who’s just trying to tell you something. There are so many rare lessons to be learned here in this challenging and life-changing experience. They’re easier to grasp when you’re feeling better, so there’s no pressure. Keep going and if you feel like you can’t, the TSW community is here to support you.
What is a quote you live by?
Just because it’s taking time, doesn’t mean it’s not happening.
What resources help during TSW?
Preventable, the documentary, helped me the most.
What is your instagram handle?
Don’t have one =)
Thank you, Katherine.
We love you. We see you. We are you.
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