Jem and Jude – A TSW Warrior and Caregiver’s Story
I’m Jem and this story is to put on record the pain, turmoil, fight, hurt, anguish and the ultimate release from a misdiagnosed and mismanaged chronic skin condition. This is about 3 things:
Raising awareness of Topical Steroid Addiction (TSA) and subsequent withdrawal (TSW).
The ripple effect on close family and the need for 24 hour care for many months.
The every day battle associated with chronic eczema that is in fact TSA and TSW.
This is not intended to dwell on medical error or judgement.
I am 54, live in Ormskirk, Lancashire (UK)). My wife Jude and I have 4 children. I am a Professor of Medical Education but not a clinician. My background is in education.
I do not, and I never have, talked about my chronic skin condition. To get through life I box it off. I set it apart from who I am so that I can function and achieve. Only Jude, my children and close family know the impact that it has on my life. However, there is only one person I discuss it with and that is Jude, and even then any discussion is on my terms. I have seen many dermatologists over several decades. I felt they never understood and made me feel I had no choice but to suppress the symptoms. No-one in the medical profession was prepared to try and find out why and treat the cause.
My only way to cope was to shut down and develop coping mechanisms. There were many many times I didn’t cope but I would hide it. Only those at home who witnessed it knew.
The physical and mental exhaustion I have endured is hard to put into words and my preference has been not to try.
It was Jude who discovered TSW. She knew it would be a challenge to raise the topic with me. She had to research alone to really be sure that raising the topic was the right decision. She slowly drip fed me snippets of information. Sometimes through tears. The realisation she had come to I needed to figure out for myself but I needed nudging. Even once I came to the same conclusion I was stubborn and avoided all media content. It was always too painful. Jude developed relationships with key people. She talked to other warriors via Instagram and bought books. She was well informed. It took me so much courage to break down those barriers, listen, read and then slowly come to terms with how other peoples’ journeys could help my own. I eventually watched bits of the videos, read sections of books and engaged with social media content. All on my own terms and in my own way. Without these I know I wouldn’t be where I am now.
Jude posted this below on an online TSW support group towards the end of my second month of not using topical steroids:
I am supporting my husband through TSW. I just want to thank you for this group.
I stumbled across TSW on Instagram. I was looking at some reels and saw someone with extremely bad skin. It caught my eye as it looked like my husband. I had never seen anyone with skin like his. My husband is 54 and he was diagnosed with chronic eczema at aged 15. His life has been dominated by his extensively flaring skin. We have been together 30 years and I have seen him suffer so much. I watched Dr Heba Khaled’s PowerPoint and I cried. My husband had textbook symptoms for TSW. I don’t think he has ever had eczema but has always been in some state of TSW. He never had eczema as an infant but had a severe skin reaction to a hayfever injection in 1980s. Since then he has been treated with every type of potent steroid (topical, oral and injection). He has resisted immunosuppressants but steroids have been on repeat prescription for 40 years. He is now on day 51 of no steroids. I don’t need to tell you what that means! Although now is hell, for the first time he (we) can see hope. I am so grateful for everyone who has shared their journey on social media. We would never have found TSW if you hadn’t. This group is such a support. Thank you xx
I was unable to seek direct advice and support. It was just too difficult and painful. Jude searched and contacted those who had written and published about their experiences of going through TSW. We will be forever grateful.
Book: Curing my Incurable Eczema Paperback (2017)
Dr Heba Khaled
Youtube: An Overview of TSW
Dr Ruth GP Instagram: drruthskinjourney
Claire TSW Instagram: theendlessitch
A US doctor has been a key reference point throughout:
Marvin J. Rapaport, M.D.
Youtube: Interview with Dr Rapaport – Topical Steroid Addiction/Topical Steroid Withdrawal
Another key reference point: TSW Syndrome Support web pages: ITSAN
My first blog is below. I will be adding to this over time as I continue to recover from TSA. Thank you,
How did I not know? The revelation of Topical Steroid Addiction (TSA) and Withdrawal (TSW)
A Photographic Diary
Supporting Dad (Reflections after 6 months of TSW)
“As I pass the milestone of 6 months into TSW I wanted to write about my family support…They explain far better than I could the impact TSW has on my close family.” -Jude