We all may be walking beside each other, but our stories are never the same.
Name: Henry Jones
Work: Student (currently I’m at home due to TSW)
Date of Withdrawal:
What type(s) of steroids did you use?
Hydrocortisone 1%, Hydrocortisone OTC, Betamethasone Valerate 0.5% Ointment
Are you on any other medication?
Do you have a supportive doctor?
What is/was your favorite comfort product?
What is the hardest thing you’ve had to endure during your withdrawal?
Getting no sleep & having to pull myself out of bed for a shift at work, or a long day of lectures whilst my body is oozing, cracked, and flaking.
What is one thing you are grateful for during the withdrawal process?
It gave me confidence within myself and I’m not as ugly as I tell myself!
How did you discover you had TSW?
I used topical steroids for 4 years until the hydrocortisone no longer worked on my body and my flares were becoming out of control. They were all over my body and no amount of cream would slow them down.
What were the first tell tale symptoms you experienced?
Uncontrollable flares and weird thermoregulation issues.
What is one memory during the withdrawal that you will never forget?
Me on New Years Eve pretending like everything’s fine whilst it felt like my skin was being stabbed all over.
How is your TSW journey going?
It is currently very hard. I have had to move home from university. However, I know one day I will be completely clear of this and will look back and be grateful.
If you had a call to action for the medical community, what would it be?
MORE AWARENESS!!!!! Doctors need to stop being such twats and open their minds!!!!!!!
What was a pastime you used to help during TSW?
Smoking weed and watching ASMR. Meditation as well.
What is something you wish to share with the community?
Don’t feel guilty for picking up bad habits whilst recovering. You are doing everything you can to survive and that is enough.
What is a quote you live by?
This too will pass.
What resources help during TSW?
Just searching TSW on Tiktok and YouTube and watching the videos.
What is your instagram handle?
Thank you, Henry.
We love you. We see you. We are you.