Nicole’s T.S.W. Journey

We all may be walking beside each other, but our stories are never the same.

Name: Nicole

Age: 36

Work: Program Manager

Date of Withdrawal:

April 14th 2020

What type(s) of steroids did you use? 

Clobetasol Propionate USP .05%, Hydrocortisone Butyrate .1%

Are you on any other medication?


Do you have a supportive doctor?


What is/was your favorite comfort product?

Ice packs – #1 comfort measure

What is the hardest thing you’ve had to endure during your withdrawal?

I started my withdrawal in April 2020 right after the beginning of the COVID lockdown. My husband and I were both working full time jobs virtually while our 1.5-year-old was home out of daycare and I was pregnant with our 2nd child. This was the most all-consuming, challenging, demanding time of my life during a time when the opportunity to rest let alone deal with a debilitating health condition was non-existent. We were juggling work passing our toddler back and forth to watch in between work meetings, trying to keep up with our jobs and I was a walking zombie barely getting 30 minutes of sleep a night just starting on my TSW journey. My husband did everything he could to let me rest as much as possible but there simply wasn’t an opportunity for getting the outside help we needed at the start of COVID and doing everything we could to keep our kids safe. It was a mental battle of there really were no other options; the situation required me to push through.

The other most difficult thing was having essentially no family/friends who understood what I was going through besides my husband. As this community knows, TSW is a very lonely place to be and it’s really difficult not having the support of people who understand what you’re going through. When people started getting together once COVID circumstances improved, it was a very strange feeling mentally to see people who had no idea of the trauma I had been through.

What is one thing you are grateful for during the withdrawal process?

I have to name two and they are my husband and Dr. Olivia Friedman. My husband’s mindset towards my TSW helped me immensely mentally. It takes little effort to spiral into the black hole mentally, emotionally scared of what’s to come, how long you’re going to have to deal with this condition that just uprooted your life. Though you feel like a monster, he never looked at me like I was one, always looked at me the same as he ever did and spoke about what I was dealing with as simply “something challenging we needed to get through” and that it wouldn’t last forever. He had a confidence that it was temporary and I leaned on that heavily mentally. Every time he acted like it was short term and I would get through it it gave me strength and a boost of optimism during the times when I wasn’t sure. I had no doubt in my mind that what I was doing was the right thing but struggling through pain, scared about what lie ahead and how long it would last was still a daily battle and his attitude gave me a lot of strength and encouragement.

The 2nd person I’m most grateful for is Dr. Olivia Friedman who gave me my life back. I was 7 months into TSW and had just had my 2nd child 2 months before when my TSW was the worst yet and I started working with her using herbal medicine. Late one night researching for answers, help, anything I came across an article of before and after TSW results through her treatment. After that I listened to every available interview with her learning about traditional Chinese Herbal Medicine. I was extremely hopeful it would work for me and contacted her to get started. Over the next 16 months I worked closely with her meeting virtually every 2 weeks to get my new herbal formula and month by month slowly got my life back. I cannot say enough wonderful things about this person. She is one of my heroes who herself was positively impacted by TCM and made a career transition to study it and help others. Having a doctor who is extremely kind, patient, there for you not just through actually healing you back to heath but mentally/emotionally during a horrific condition that few people understand is a miracle gift I will forever be grateful for.

How did you discover you had TSW?

I developed eczema for the first time in my life after I had my 1st child; no previous history. It started as a small rash on my finger and then my face got itchy. I didn’t know it was eczema at first but over the course of months tried many things under the sun to fix it: allergy testing, NAET, switching over all household products etc.. I eventually ended up at the dermatologist’s office. They told me it was eczema, incurable and gave me 2 topical steroids: Hydrocortisone butyrate .1% and clobetasol propionate USP .05% and provided use instructions with no warning or education of the class level beyond saying it could of course thin the skin. Over a very short time period- several months max, I developed spreading rashes, swollen eyelids, worsening symptoms etc.. My doctors attributed my symptoms to my body doing wild things due to my pregnancy and informed the topical steroids were safe to continue using as prescribed. I went crazy doing what felt like hundreds of hours of research until I finally came across hints of TSW. My dermatologist after they saw my photos, said they’d speak with my OB about doing a round of prednisone given the severity of my symptoms and that’s when I decided that was it- and cut off everything cold turkey.

What were the first tell tale symptoms you experienced?

Spreading rashes all over my face and neck, waking up to swollen eyelids, intense itching, reactions to more and more food. After I officially started withdrawal the other symptoms came in more heavily: the zingers, complete insomnia, burning, incessant itch, thousands of flakes a day, list of foods I could eat got smaller and smaller until I ate the same 3 meals every day for 6 months straight, significant weight loss, couldn’t take showers- husband had to wash my hair, etc.

What is one memory during the withdrawal that you will never forget?

Halloween 2020. Halloween is my favorite holiday next to Christmas and that happened to be the worst day of my entire TSW journey in terms of physical symptoms, so every Halloween since I recall that day very clearly.

How is your TSW journey going?

I am extremely fortunate to consider myself healed from TSW. All in all my healing was just over 2 years and I consider that extremely fast given the insane class 1 steroid I was exposed to. Without Dr. Olivia’s treatment I have no doubt in my mind that my withdrawal would have lasted much, much longer. I still have some food sensitivities, minor skin issues/occasional mini-flares I’m working through but the TSW itself I consider to have resolved. My heart goes out to all of our community long haulers that have had to endure this for much longer.

If you had a call to action for the medical community, what would it be?

Be open enough to learn about functional medicine, viewing the body as a complete, connected system and identifying root causes of symptoms. The way prescriptions, big pharma, and the way in which our western medical care is established does not allow for big shifts in the integration of a functional medicine approach however, by exposing yourself to it, you open your mind to a more integrative approach and can expand your use of available tools to provide the best treatment to your patients.

What is a pastime you use to help during TSW?

After the birth of my 2nd child, my TSW was the worst yet. Something that greatly helped me and I looked forward to every day was getting both of my kids in their stroller and going out for a walk. Despite exhaustion, getting outside and out of the house helped me a lot mentally and I used it as my “hope session” in which I would listen to inspirational eczema podcasts, youtube videos regarding healing, TCM, etc. It gave me a mental boost. The other thing that I wished was different at the time but likely helped me push through was staying busy caring for my 2 under 2 babies. Though I longed to be able to lay in bed and do nothing but rest, having to care for them kept me busy, forced me to push through and likely helped distract my mind from the pain and mental TSW struggle.

What is something you wish to share with the community?

3 things:

1). Trust yourself. Not only are you having to go through a life altering, debilitating condition but you likely had to figure out what was even going on completely on your own with little to no support. I find that alone completely amazing as well as shocking but all the more reason to trust yourself. Your intuition and resourcefulness led you to finding and making the right decisions for yourself. Let that inner guidance and self trust carry over into all areas of your life.

2 songs that helped me and were played on repeat are “Healing” by Riley Clemmons & “Keeping your head up” by Birdy. Sharing in case they are helpful to you too.

Lastly, I wish to say Thank You to all of the amazing heroes in this community. There are true, selfless heroes whom I am so grateful to have fighting for this community and am very inspired by you. It’s extremely comforting and reassuring to have such wonderful people dedicating themselves to this critical, advocacy work. There is a lot of momentum to be grateful for.

What is a quote you live by?

“Everything happens for a reason.” Despite the horrific condition of TSW, there are also a lot of gifts and knowledge that come from it that I never would have gained otherwise.

What resources help during TSW?

  • Preventable
  • Still Preventable! — hopefully 😉
  • The pdf resource & supportive doctor documents on ITSAN’s facebook page and website
  • TSW Facebook groups

What is your instagram handle?


Thank you, Nicole.

We love you. We see you. We are you.

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