10 tips for caring for chronic eczema or topical steroid withdrawal

I know how hard it can be watching someone suffer with a condition that you don’t have first hand experience of yourself. It’s difficult to know what to say or how to help. And it can be heart-breaking watching them struggle, knowing they are in pain and you feel powerless to help. Here is my advice of what was really helpful for me during my Topical Steroid Withdrawal worst days.

So if you have a friend with severe eczema or who is going through Topical Steroid Withdrawal, this blog could be really useful. Some of this is obvious but not all of it. It applies for any chronic condition really. Sometimes people can feel so low that they won’t be able to reach out for help. This isn’t any reflection on you or your friendship with them. They will simply be running on empty.

They will be in survival mode.

Support from close friends and family could really make a difference to their experience and help them to not feel so alone and lonely.

I wrote about this a while ago in, How to speak to someone going through TSW. This blog gives you some insight into the kinds of things we find really hard. Things NOT to say! And explains the things that really wind us up! It may seem helpful to suggest your favourite moisturiser to us but for a person who has tried everything and is just feeling so tired of fielding well meaning comments it isn’t helpful. We don’t want advice or to hear about your insect bites, or the time you had a really nasty rash.

We just want a hug, for you to listen and to treat us like a human being, because the chances are we feel like a walking wound. Self conscious, unconfident and exhausted. Living with constant pain takes it toll too.

So what can you DO to actually help?

Here’s some really practical ideas:

10 tips that could help you care for someone with TSW or eczema

1. Offer your time – It can be really hard to get on with daily life, housework, gardening, washing, cleaning… I think if someone had offered to help me out with the garden and housework it would have meant so much. Things often got on top of me and I did it when I had a good day. But having a clean house to heal in is a wonderful gift to give.
2. Cook some food – Offer to bring round meals, come round and do a batch cook and put meals in their freezer. Ask them what they’d really love, what they’re craving and bring them their favourite takeout. Bring them a coffee from the local cafe! It can be very lonely and isolating going through TSW.
3. Don’t get annoyed if they don’t respond – Lack of sleep, daily fatigue, pain and discomfort and very low mood, depression and anxiety will be in full force so your friend or family member may not prioritise replying to you. It isn’t personal. They days blur into one and they may not have the energy to think what to say and may also be fearful of seeing anyone.
4. Just listen – Be there, on the phone, or in person. Listen, ask questions. Don’t offer any advice or suggestions because trust me when I say, we’ve tried everything. Unless someone asks you specifically for advice for their skin, don’t try to offer any sort of suggestions. But do listen, ask questions and encourage them to share. It will help you understand what they’re going through.
5. Do your research – If you want to really help a friend going through TSW, find out everything you can. Do your research. Explore the charities, sources and research available. Make it your mission to find out everything you can so you can more fully understand them. It will also mean you don’t have to keep asking questions. Check out my TSW FAQ resources page for links and help.
6. Ask what you can do to help – They may say they’re OK and refuse your offer, but ask anyway. Be persistent and ensure they know nothing is expected in return. Ask what you can do to help. It might be just popping in to have a cuppa, doing some shopping for them, keeping on top of the gardening, doing a load of washing, cleaning up when they can’t. It could be helping them wash their hair when their hands are too sore. Or giving them a manicure or pedicure to cheer them up. It could be small things or big things. Just let them know you are there.
7. Tell them you love them no matter what – Real friends should know this, but they might need reminding. Tell them you don’t care if their skin is bad, that they don’t need to be on show, wear makeup, or cover up their skin condition. Tell them it’s not important to you and tell them you love them just as they are. And also that you are behind them and have their back through their healing journey.
8. Try to coax us out – Ask them for a walk, out for a coffee, or for a picnic… and encourage them. I guarantee they’ll feel better afterwards. Choose somewhere close to where they live, offer to take them so they don’t need to drive (if they have nerve pain like I did driving felt dangerous due to the spasms in my arms and face). Somewhere quiet, comfortable and easy to bail from. Most times I always felt better when I dragged myself out for a walk etc.
9. Invite them to take part in something – I’m talking about perhaps an online Zoom yoga meetup, or set a challenge to read the same books together. They may struggle to read but they could get the audio book instead. Listen the the same podcast together and meet to chat about it. You could also watch the same TV program or Netflix series and have a Whatsapp check-in group to chat about it. I found doing yoga on zoom with my little group of TSW friends so encouraging. I could get onto the mat and do what I could, and I know the rest of the group find it motivates them to keep trying, even on days when they feel really poorly. Giving them a purpose, however small, might just help lift their mood.
10. Thoughtful gifts – One of my friends would bring me things like lollipops, some lovely shampoo she knew I loved and once a book written by a fellow TSW sufferer called The Peculiar Disappearance of Jillian Sanchez by Kelly Toews. I’d not even come across Kelly before and had certainly never heard of the book. It was such a touching gift and is well worth a read for anyone going through TSW and their friends and family. It’s only available on Amazon in Canada so who knows how she found it! Thank you Vic x
11. Cheer from the side lines – what really helped me was when people told me how well they thought I was doing and how brave, strong, resilient I was being. Because quite often we feel weak and pathetic. We feel like we should be doing better. So reminding someone they are amazing can be really encouraging and give them a boost to keep going.

I know many people move back home so their family can care for them, but for many of us that isn’t possible. Either by choice or because we have partners and children to care for.

I did find this wonderful article, Coping with Chronic Illness: A caregivers guide to helping others.

And if you are a carer for anyone with a rare condition, Check the Rare Patient Voice website.

I’m writing another blog packed with great gift ideas for people with eczema or TSW so watch out for that.

It may take me a while because I keep discovering new wonderful products to share. From clothing to books, self help to journaling. You’ll just have to wait! It doesn’t have to be hard to find thoughtful gifts that are not based on chocolate, skincare or food! All things best avoided unless you really know someone well and know what they can and can’t have.

I’d love to hear from friends and family and those with chronic eczema and topical steroid withdrawal. What really helped you? How did you want to be cared for? Who really made a difference? What advice would you give to carers?