“You will never get better until you stop trying to get better”
1.When did you start using topical steroids? And why?
I started applying when I was 16, because the doctors said I had children-eczema that I would grow out of eventually. So we used it for my neck and nipples.
2. What was the name of the topical steroid?
Bethametasone (potent 3)
3. Were you ever prescribed more potent steroids?
When I was 24 I took a allergy-test with the derm and nothing came out so they gave me potent 4, dermovate. To apply on my hands/wrists.
4. How did you find out about RSS?
I’m a typical case of Topical steroid addiction, one day I googled this in Dutch first but I couldn’t find anything. I had a feeling I really needed the TS to make it normal again. For a while. But then it would come back within 5 days or so. I stumbled on the itsan website, saw the animated clip and it was such an eye-opener!
5. What made you feel you had RSS?
My hands and arms would gradually worsen and it burned, was bright red and spreaded like fire. With the dryness after every flare.
6. Were you diagnosed by a doctor? Did you have a supportive doctor?
No, I am a beautytherapist so this was a crazy but educational and inspiring ride for me! I found a great product for my company and skin and the manager in Holland of this product is Chinese and she knows a lot about TSW and the Chinese derms that dó treat this in different ways but without TS.
7. What were your first symptoms?
Itchiness, redness, and burning.
8. Is your family supportive? Friends?
YES! And it is oh so important, my mother is the strongest person I know and I couldn’t have done it without her. My husband, father, sister and kids have been by my side the whole ride. Some friends were interested and asked how it would go sometimes. But as we all know, if you don’t go through this you really don’t know what it is.
9. Have you ever been to a hospital for this?
I made an appointment with a derm to get UVB Therapy. I got it at home! That was great for winter 2015.
Had a skin infection one time through TSW and I was on antibiotics for one week.
10. What has been the hardest part of this condition?
ITCHENESS! And the lack of sleep and almost no physical contact. But after all, the mental struggles on bad days are the hardest.
11. How long have you been in withdrawal?
Im 31 months in now, but I stopped counting after 2 years, because it became bearable after that, and I got to do everything I wanted to do again. But I think I’m not healed yet.
12. What do you use as comfort measures during this?
Dermaviduals, my skinbarrier creams.
13. Are you employed? Has this affected your job status?
I have my own business. I worked throughout the whole process but of course it affected everything. But for the better…at the end.
14. Have you gone to therapy/wish to go to therapy because of this condition?
For a while, and it was more in a coach/mindfulness-way than a psychologist.
15. If there is one thing you could say to another sufferer, what would it be?
One day at a time, and time will heal!
Amazing interview! Thank you tons, Maartje!