We all may be walking beside each other, but our stories are never the same.
Name: Imogen Tingay
Work: Student Dietitian
Date of Withdrawal:
What type(s) of steroids did you use?
Topical – frucidin, betnovate
Are you on any other medication?
Do you have a supportive doctor?
What is/was your favorite comfort product?
Medihoney cream, ice packs
What is the hardest thing you’ve had to endure during your withdrawal?
The impact on my mental health/self esteem.
What is one thing you are grateful for during the withdrawal process?
The strength its given me now! Grateful for my body.
How did you discover you had TSW?
Steroid creams had stopped being effective and my doctor wanted me to increase the potency of my creams. Alarm bells started screaming in my head so I knew I had to find another way. My skin was erupting every single day even though I was using steroids and my whole body hurt.
What were the first tell tale symptoms you experienced?
Insomnia! I had never experienced this before TSW and I knew something was going on, systemically. My cheeks were oozing constantly and my skin was red, mottled and burning.
What is one memory during the withdrawal that you will never forget?
Finding that first swollen lymph node under my armpit. I was about 3 months in and had just gotten out of bed, trying to psych myself up for work. I was getting dressed and realised my under arm felt stretched and weird. I put my hand there and the lymph was the size of a golf ball. I went straight into panic mode and was terrified.
How is your TSW journey going?
I’m all healed!! My TSW journey lasted about 18 months and since then my skin has been so much stronger. I am now committed to help others.
If you had a call to action for the medical community, what would it be?
LISTEN TO THOSE GOING THROUGH IT. Its too easy for medical professionals to look at studies online that say it isn’t real or that we just have steroid-phobia, but these simply aren’t true and the hundred and hundreds of people going through TSW speak for themselves.
What is a pastime you use to help during TSW?
I would take lots of time to have a quiet five minutes with a cup of tea as my moment of calm. Getting outside in the sun and in nature always helped.
What is something you wish to share with the community?
Use this community as much as you can. The information now coming out supporting TSW, although rare, is something so exciting and I feel that we are on the cusp of being recognised medically. Keep going and don’t let others put doubt in your brain. I know there will be a lot of it but you are doing the right thing. Believe in yourself and your body.
What is a quote you live by?
Climbing the mountain is hard, but imagine the view at the top.
What resources help during TSW?
- Preventable Documentary
- Instagram really helped
What is your instagram handle?
Thank you, Imogen.
We love you. We see you. We are you.