Speaking to someone with TSW

Are you caring for someone with Topical Steroid Withdrawal (TSW)? Actually this message would apply to any condition that limits life, anything that affects someone, is difficult to live with, is relentless, is painful. It can equally apply to someone living with life threatening allergies. A completely invisible condition!

Does your friend, wife, sister, mother, child have eczema or TSW and is it hard for you to watch them and frustrating when you see them struggle?

And do you REALLY understand how to care for them most effectively?

I want to say first off, most of these things I’ve mentioned below come from a place of kindness, of wanting to help, or seeing someone suffering and wanting to reach out and be there. And we do get that.

Most of the time I welcome the opportunity to share about eczema, TSW or whatever it is. And I do, often and whenever asked I’m happy to explain what’s going on if someone asks, but it’s really hard sometimes because this kind of thing happens SO MUCH and sometimes we are just too tired to keep on explaining and pushing down our feelings of shame, of failure and of being a burden. Anyway I hope this is useful. And I am eternally grateful for all my family, friends and support network who are amazing.

Top ten tips – what not to do or say!

Here are my top 5 tips for caring for someone who is going through Topical Steroid Withdrawal. I’ve done a little insta live that goes into more detail so please watch that too. But in a nutshell:

1. Don’t ask us when we will get better. We don’t know. No one does. It could take months, years, MORE YEARS. It will take time and we all just need to be patient.
2. Don’t ask us what triggered this latest flare. Chances are that again, we don’t know and these cycles of healing happen regularly until we heal. Regardless of anything else.
3. Don’t say anything at all if you’re not sure what to say. Just ask if you can help. This will make us cry because we don’t get asked this often.
4. Do not offer us advice, e.g. Oh try Vaseline, it got rid of mine, or any other magical cure or treatment. We have tried everything and spent a fortune doing so.
5. Do your own research so you understand the condition – Don’t expect us to keep on explaining why we look like this to you. Please, if you really care about someone, take some time to find out more about what they are going through.
6. Don’t tell us to stop scratching! Don’t you dare! Don’t even think about it. We try to stop all day long. The itch is contact and relentless and we try so hard. Sometimes I actually think it’s OK to have a scratch, to let out some ooze quicker, to remove some skin flakes. Who on this planet is perfect and can ignore all the itch triggers? No one!
7. Don’t say, “Oh but it looks fine today” or “It doesn’t look that bad” because we have probably been in agony, struggled to make ourselves presentable, not slept for days and are dreading the next flare… I could go on. But we do a lot of things that save you from seeing us at our worst. We try to hide the worst from you.
8. Don’t say, “Oh I have eczema” – this is NOT eczema
9. Don’t judge us for our treatment choices. This journey is individual. Some people use immunosuppressants, some try Biologics, Some taper of steroids and need oral steroids, some do Moisture Withdrawal, some of us moisturise. None of us want to be judged. This condition is brutal and we will all get through it in our own way.
10. Don’t ever say, what’s up with your skin? of words to that effect. If it looks bad it will probably be painful and uncomfortable and we may be really struggling. Just don’t mention it. You can bet we are 100% aware of it so keep these kinds of statements or comments to yourself.

The 3 question check

And here is something I learnt which I think is really helpful to remember, every time you feel like saying something to someone or about someone behind their back.

1. Is it true!
2. Is is helpful?
3. Is it kind?

If the answer is NO to any of the above, it’s not worth saying.

Have I missed anything?
I’d love to hear your thoughts. And hope I’ve not offended anyone. I really don’t want people to be scared of asking questions and asking us how we are, but this whole TSW thing is relentless and monotonous.

And unless you really want to know… chapter and verse how we really are, best to maybe stick to other subjects of conversation.

Thanks for listening. Love to hear your thoughts.