One of the most exciting features I’ve been keen to play with here on Substack is the Threads feature. The basic idea is that I open up a question or topic to the floor, and you lovely people can reply with your recommendations, thoughts, questions, feelings etc.
I’ll post a new discussion topic every Friday, and the Threads will stay open so you can join in or read past threads. Anyone can read these Threads but you can only comment if you’re subscribed to my Substack, so if you’re still on the fence, let this be your sign to join us - it’s free and we’re lovely!
So, this week’s thread question is: What is the one thing you wish you knew about rosacea when you were first diagnosed?
It can be anything - a product, a fact you only learned later, a trigger you hadn’t even considered… anything! I’d love these Threads to be a resource for you to share your knowledge and meet other people in the community, so please do comment and feel free to like and reply to other people as well - we’re all here because we are in the Rosacea Club! 🧡
The one thing I wish I'd known about rosacea when I was first diagnosed: that just because there isn't a cure, that doesn't mean it can't be helped. That I could do lots of things to make my skin more comfortable and happy, and that things weren't as hopeless as they were made out to be!
I’m like you - wish I hadn’t believed hype and spent a fortune blindly buying products that promised the earth and didn’t deliver. That there would be good and less good days and stop myself from not having photos taken with my child because I didn’t like how I looked - seems so superficial now
Oh gosh this rings so true for me too. So many photos I deleted or untagged myself from because I didn't like how my skin looks. Whole years of my life that I have no proof of because I didn't want to be seen. It's so sad.
Less is more. And just because one dermatologist didn’t help, doesn’t mean you’re stuck - there dermatologists who want to help. It’s like therapists; you just gotta find the right one sometimes.
Absolutely! I wish I knew that my first GP was just working on outdated information and was too lazy to give me any further help. I should've asked for another doctor and pushed for more support, but I didn't really know I was allowed to do that!
Wish I knew that there were triggers for my rosacea, that I have some power to control what’s happening to my skin. I was given zero information when I went to a dermatologist at a large and respected university clinic and was handed a sample for a thick makeup to try to cover it up.
It was a while ago & think it was if all else fails go for green tint. I did feel it was all very dismissive. I don't think a lot of medical professionals grasp how your skin can effect your mental health, social life, job and everything basically!
Wish I'd known that going to stand outside in the freezing cold and then going back into a sweltering hot pub will actually make the redness and the heat worse. Temporary relief isn't usually a good thing. In the words of Skunk Anansie - just because you feel (momentarily) good, doesn't make it right
Yes! Short term solutions that actually cause issues in the long-term. I had a similar issue with a certain fruit-based scrub. My skin was so dry and flaky, so I scrubbed my face twice a day and it looked better... temporarily! But the damage I was doing was horrifying and my skin was livid!
Definitely!! There is so much we can do, but I remember how extremely desperate I was when my rosacea was terrible and it took really long to get diagnosed properly.
Yes! If your skin is more resilient, it can withstand more things which means you might be able to tolerate some of your triggers more easily. It makes a huge difference.
I have certainly found this. In fairness to GPs they have certain steps to follow before referral to a dermatologist (speaking from a UK perspective) & skincare isn't really in their repertoire.
...it has been for me & I think triggers & the skin barrier have a symbiotic relationship, that said I also wish I was told there's no textbook formula for managing rosacea
What you said above, that just because there is "no cure", doesn’t mean that you won't find some relief. But I wish I knew about your website/community earlier. Having the Rosacea community has been so helpful. I've learnt about my triggers (an ongoing process) and the importance of sunscreen. Thank you!
The community has been an amazing help for me too, just knowing that there out people who understand and empathise is such a huge thing. I'm so glad you found us!
I wish someone had said it can be managed 15 years on I'm still trying to manage it by myself I'm hoping the GP and dermatologist referral will help with the holistic approach needed.. my optomalogist letter to the GP has helped start this ball rolling let's hope to have a plan in place by the end of the year!! And Lex you've been my saviour when I've felt so let down and had no clue what was going on with my skin, I thank you for putting yourself out there xx
That trust is so important and sadly I was lacking it too. It only came with time and experience, but it's partly why I do this job now: if I try to teach others to have that belief and know they can self advocate I want to be able to save them some time, money, and heartache.
And I totally agree. I've taken so much strength from the rosacea community, it's been an enormous help to me 🧡
The one thing I wish I'd known about rosacea when I was first diagnosed: that just because there isn't a cure, that doesn't mean it can't be helped. That I could do lots of things to make my skin more comfortable and happy, and that things weren't as hopeless as they were made out to be!
I’m like you - wish I hadn’t believed hype and spent a fortune blindly buying products that promised the earth and didn’t deliver. That there would be good and less good days and stop myself from not having photos taken with my child because I didn’t like how I looked - seems so superficial now
Oh gosh this rings so true for me too. So many photos I deleted or untagged myself from because I didn't like how my skin looks. Whole years of my life that I have no proof of because I didn't want to be seen. It's so sad.
Less is more. And just because one dermatologist didn’t help, doesn’t mean you’re stuck - there dermatologists who want to help. It’s like therapists; you just gotta find the right one sometimes.
Absolutely! I wish I knew that my first GP was just working on outdated information and was too lazy to give me any further help. I should've asked for another doctor and pushed for more support, but I didn't really know I was allowed to do that!
Wish I knew that there were triggers for my rosacea, that I have some power to control what’s happening to my skin. I was given zero information when I went to a dermatologist at a large and respected university clinic and was handed a sample for a thick makeup to try to cover it up.
I had no idea about triggers until I did my own research, I can't believe my initial GP didn't even mention them!
I will be eternally grateful to YOU where I learned what my triggers are (hot showers, wine, stress)
Ahhh that's so great to hear, it's amazing when those pieces slot into place isn't it?
I remember being told by a GP, get some green tinted makeup - gee thanks!
Urgh that's so dismissive! Also telling you how to mask the issue without actually offering any advice to help the underlying cause? 👎🏼
It was a while ago & think it was if all else fails go for green tint. I did feel it was all very dismissive. I don't think a lot of medical professionals grasp how your skin can effect your mental health, social life, job and everything basically!
Wish I'd known that going to stand outside in the freezing cold and then going back into a sweltering hot pub will actually make the redness and the heat worse. Temporary relief isn't usually a good thing. In the words of Skunk Anansie - just because you feel (momentarily) good, doesn't make it right
Also, excellent Skunk Anansie reference. *goes to Spotify immediately*
Yes! Short term solutions that actually cause issues in the long-term. I had a similar issue with a certain fruit-based scrub. My skin was so dry and flaky, so I scrubbed my face twice a day and it looked better... temporarily! But the damage I was doing was horrifying and my skin was livid!
I wish I knew about Soolantra like medication that helped my type of rosacea!
Yes! So many people hear 'no cure' and think that means no medication will work. I just wish there had been more information out there!
Definitely!! There is so much we can do, but I remember how extremely desperate I was when my rosacea was terrible and it took really long to get diagnosed properly.
Oh definitely, I remember that feeling so well!
I wish I was told how skin care can help & that looking after the skin barrier is as important as looking for triggers
Yes! If your skin is more resilient, it can withstand more things which means you might be able to tolerate some of your triggers more easily. It makes a huge difference.
I have certainly found this. In fairness to GPs they have certain steps to follow before referral to a dermatologist (speaking from a UK perspective) & skincare isn't really in their repertoire.
...it has been for me & I think triggers & the skin barrier have a symbiotic relationship, that said I also wish I was told there's no textbook formula for managing rosacea
What you said above, that just because there is "no cure", doesn’t mean that you won't find some relief. But I wish I knew about your website/community earlier. Having the Rosacea community has been so helpful. I've learnt about my triggers (an ongoing process) and the importance of sunscreen. Thank you!
The community has been an amazing help for me too, just knowing that there out people who understand and empathise is such a huge thing. I'm so glad you found us!
I wish someone had said it can be managed 15 years on I'm still trying to manage it by myself I'm hoping the GP and dermatologist referral will help with the holistic approach needed.. my optomalogist letter to the GP has helped start this ball rolling let's hope to have a plan in place by the end of the year!! And Lex you've been my saviour when I've felt so let down and had no clue what was going on with my skin, I thank you for putting yourself out there xx
I am keeping everything crossed for you with your appointments. And thank you so much for this lovely comment x
https://open.substack.com/pub/yanpan0508/p/my-ultimate-birthday-wish-a-self?r=ad7en&utm_medium=ios
I still know nothing 🥲 is it possible to test for Dermodex on the skin for example?
That trust is so important and sadly I was lacking it too. It only came with time and experience, but it's partly why I do this job now: if I try to teach others to have that belief and know they can self advocate I want to be able to save them some time, money, and heartache.
And I totally agree. I've taken so much strength from the rosacea community, it's been an enormous help to me 🧡