“I remember that the feelings
I am having aren’t permanent“
I’m Bethan Rose Paley, I am 22 years old & I live in a village in North Yorkshire, England. I am currently studying to become an actor. If you want to find out more about me or drop me a message, go to my Instagram page @BethanRosePaley.
What caused SJS/TEN syndrome and how long ago was it?
I was diagnosed with Toxic Epidermal Necrolysis in August of 2018 at the age of 20. The cause was the medication Lamotrigine.
Which symptoms did you have?
It started with sores on my lips in my mouth and a few on my body. It spread over my entire body very quickly- my airways and intestines were the worst affected. I was put on a ventilator for 6 weeks and they had to drain two septic abscesses inside my abdomen. My eyes were badly affected too. They told my parents to prepare for the worst twice during those 6 weeks.
Tell us about your experience with SJS/TEN.
I was in the hospital for 9 weeks in total of those weeks in intensive care on a ventilator (breathing machine). Before I was admitted to the hospital, I was told there was nothing wrong with me and sent home. When I was finally admitted, I was called an attention seeker by a nurse- within less than 24 hours of her saying that, I was transferred to a bigger hospital and put on a ventilator because I was unable to breathe on my own.
Whilst in intensive care, I was treated exceptionally; they saved my life (it was a hospital with a specialist burns centre, so they had seen TEN before and knew how to treat me).
Unfortunately, after being transferred out of intensive care, I was put on a very busy and understaffed ward, where the nurses and support workers didn’t understand the severity of my conditions and I was neglected again, despite still being severely ill.
Fortunately for me, my Mother works in the health care system and was able to write complaints to both hospitals- both of which have now apologised and implemented measures to make sure what happened to me, doesn’t happen to anyone else.
After leaving the Hospital, which side effects did you have and feel?
I had: severe fatigue, various eye complications, my hair & nails fell out, various skin issues, bowel problems, vaginal stenosis, respiratory problems and severe muscle wastage (and probably more that I have forgotten!).
I was tired and slept most of the day. I was grateful to be alive, but frustrated with my physical health and asked, why me, a lot of the time. I was also suffering from post-traumatic stress after experiencing such a traumatic event.
How was your recovery process and were you followed by doctors afterwards?
Almost two years later, my recovery is still ongoing. My doctor saw me every few days after I left the hospital and I am currently still being treated by 8 different consultants at the hospital which is an improvement from the 10 I was originally seeing.
Which were the highest and lowest parts of this experience?
The worst part of the experience was the experience itself! The pain was excruciating and the recovery was long and mentally very difficult, but the worst part was not being believed/taken seriously before and after intensive care, that is what really traumatised me when you know you are seriously ill and no one around you understands the severity, it is terrifying!
The best part is the outlook on life it has given me, I was being given Lamotrigine to combat my depression because before I got ill, it had completely taken over and ruined my life. After being so close to death, I realised that I had to get on, live my life and strive to be happier- we are not here forever! My depression didn’t magically go away but I made sure after being so physically ill that I needed to take care of myself, both mentally and physically- and I did. Two years later, I recovered from depression.
How did this disease change your outlook on life?
I am a much stronger person. The journey up to now has been so difficult, mentally and physically, but I am here, I have done it and I continue to fight everyday-and I am extremely proud of that. It has shown me that I am stronger than I think I am and that I can do anything I set my mind to! It has also instilled the belief into me that we should all strive to be better and make steps to achieve our goals every day! Just because something is difficult, doesn’t mean it isn’t worth doing, or that you should give up.
What are the tips you’d like to give to SJS/TEN patients?
Ask questions, raise your voice, and be heard! You know your body and mind the best, so if you’re not happy with your treatment, ask for a second opinion.
Regarding your recovery, look after yourself, be kind and patient with yourself, You’re on a long, painful and often lonely journey, but you will come out of it stronger – it DOES get better in time. You’re not where you want to be now, but if you keep trying, you will get there. You’ve been through so much and you’ll come out of this fighting.
When you’re having a bad day, what do you do to cheer up?
I think of how far I have come in all aspects of my life. I remember that the feelings I am having aren’t permanent and I try to be kind to myself.
What makes you happy every day?
Being alive, spending time with people I love, growing as a person and helping others.
Bethan Rose Paley