How To Care For Someone With TSW | Part 2
Welcome back to Part Two of our Blog Series on Topical Steroid Withdrawal. If you're looking for Part One then click here. Read on for Part Two where Lauren shares her top tips and practical advice for carers of loved ones with TSW.
Living with TSW is more about daily management and comfort than treatments. There are no quick fixes! The key things are taking the right comfort measures, infection prevention, pain/itch management using safe scratching techniques and making improvements with diet and routine. Ultimately time is a great healer, and being as comfortable as possible while you overcome this addiction is key.
These were the key things I did to try to speed up my recovery and give myself the best chance to heal.
First, Naturopathy, which was a new avenue for me. I did tests to identify what my body was lacking and was given advice on how to heal through eating the correct food and supplements. I gave my body EXACTLY what it needed and adjusted my lifestyle with a bespoke and personalised lifestyle plan, which taught me a great deal about natural healing, which I loved. I would always recommend this strategy to anyone suffering with their skin and health as I feel this was the biggest factor in my recovery.
Secondly, Patch Testing was an obvious route to try, as I felt the swellings on my face could have been triggered by my cosmetics. A skin specialist taps a tiny amount of a number of potential allergens and irritants to the skin and monitors it for a reaction. A positive patch test result simply means one or more of the substances tested caused an allergic skin response.
I discovered throughout this test that I had a severe allergy to nail varnish and two specific ingredients that are usually found in them. These ingredients were in the nail varnish I was using every time I would go out on a special occasion. Looking back at my three most severe reactions, they followed occasions when I had painted my nails. Cutting out this made a huge difference to my skin!
Thirdly, I focused on my home environment. I invested in a dehumidifier to maintain the humidity of my home between 45 and 50 percent, which ensured no mould could survive in the air. I also invested in an air purifier that helped with my asthma, and overall health.
In addition I would add these practical home solutions:
- Low histamine diet helped with itchiness
- Organic cotton bedding and sleepwear
- Organic cotton gloves
- Balmond’s natural moisturisers and oils
- Westlab’s bath salts
Finally, I designed and created safe scratchers based on my experience with itchy skin. These were a life saver for both me and my brother to have access to cooling instant relief. Building an itch-relief brand had its perks as my fridge was always fully stocked with Scratch Stars and Scratch Attack rollers to have to hand whenever I felt itchy (which was often!)
If you're a carer to a loved one with TSW or severe eczema then my heart goes out to you. Below you'll find my tried and tested top tips and suggestions that worked for my family.
“Try this…. Try that!”
It’s so tempting when watching a loved one go through TSW to recommend treatments, and things you think may help. It’s great to do research and suggest new ideas, but remember that TSW can be very overwhelming and confusing, adding other things into the mix may upset and unsettle them. I made this mistake with my brother, always recommending new things and I think it was too much for him to hear all in go.
Someone going through TSW may need a lot of reassurance. Sometimes, they need a rant and for someone just to listen and not offer an opinion or advice! A communication tool that we always used was asking “do you want comfort or solutions?” – this way you can offer what they need! Maybe they don’t want you to fix anything and offer a list of solutions, sometimes people need to be heard and comforted.
TSW is a long process and you may not see results quickly. It took 8 months for me, and my brother is still going through it after 10 months. Reassuring a loved one that is suffering is essential, as doubt is one of the main mental challenges. Am I doing the right thing? Will I ever recover? How long will it take? Is it just severe eczema? These are some of the concerns that swirled round my brother's head every day. Seeing how I recovered and broke free from the steroid hamster wheel reassures my brother that he will also get through it.
Help with food and day-to-day things
Cooking, cleaning, washing, changing sheets - these are a challenge when going through TSW. Offering to help with small day-to-day things can be a big support. Cooking healthy meals together can help and create a sense of unity and togetherness..
Suggest getting out the house
Someone going through TSW may not want to leave the house. My brother didn’t leave the house for 3 months. I was always suggesting a simple walk, something in the fresh air to get out of the home environment. As you can start to go a little crazy!
Thoughtful gifts that will help them through TSW can make someone feel seen, understood, and heard. Cotton gloves, some of their favourite moisturiser, some bath salts, a safe scratcher! Something to help with their day-to- day life when suffering with this can mean a LOT!
Encouragement to make connections and friendships within the TSW community
TSW can be isolating as it is not widely understood. When I went through TSW, I hid in my room for 8 months as I could not face reaching out for support. My brother was much better at reaching out to the TSW community and I know he has made some lasting relationships. He leans on many other TSW sufferers and survivors for guidance, advice and reassurance and he finds it so comforting to talk to others going through a similar experience. The TSW community is incredibly supportive and inclusive. Check out Cotton Comfort or Cosi Care on Instagram for a supportive TSW community.
Look after yourself too!
As a carer of someone experiencing TSW it can be emotionally draining. It goes without saying that the priority was on my brother at the hardest times, but how can you show up for a family member if you aren’t taking care of yourself?! Me, my mum, and my dad found this hard, but set aside some time for yourself!
Take a break from social media and researching TSW
The information around TSW online is incredible and there is far more support and information now than there was when we were younger. TSW is different for every person going through it, and I think sometimes it’s important to try and tune out the noise, stop comparing timelines and focus on yourself. Sometimes you need to put down your phone for a few days and ground yourself to your own experience.
Educate family and friends
TSW is difficult as it may not be instantly understood by family and friends. Taking the time to explain so others can have a better understanding is a great way to widen the support system. Don’t isolate yourself, reach out and educate others too!
Lastly, Celebrate the little wins!
When going through TSW, even the simplest daily tasks can be impossible. Showering can feel like this unachievable mission that you cannot BELIEVE that people take for granted every day. Celebrate the little wins and cherish moments of improving that most people take for granted.
Thank you for reading my story, I hope it’s helped remind you that there are lots of us out there with eczema and itchy skin. I’m so relieved TSW was something I stumbled across on Instagram and I began my journey. My skin didn’t feel like my own and my body was telling me something was not right.
Thank you so much to Lauren for sharing her experience on caring for a loved on with TSW. We hope that you found her tips and insights helpful. If you are going through or caring for someone with TSW, then we acknowledge how difficult this time might be and hope Lauren's story has made you feel a little less alone.
Eczema Nightwear - Our own brand eczema nightwear is made of 100% organic cotton and ideal in helping you or a loved one with TSW finally get a good night's sleep.
Cosi Care - Lauren founded Cosi-Care, designing her 'Safe Scratchers' with the mission of helping to heal those with Eczema and TSW.
The information within this site is for education and advocacy purposes and does not substitute for professional medical advice. We would not advise that you alter any medication without prior discussion with a medical professional.