Every Friday I open up a discussion topic and ask you for your recommendations, experiences, questions, or general feelings on a specific topic.
These Threads to be a way to share your knowledge and meet other people in the community, so please comment and do feel free to like and reply to other people as well - we’re all here because we are in the Rosacea Club! 🧡
My answer: I wish they knew how much courage it takes to even make that initial appointment. That asking for help is hard, but asking for help when it's something that many people dismiss as a vain or superficial issue is even harder.
I wish they would understand the emotional impact it causes especially when you are first diagnosed and are trying to come to terms with a lifelong condition. I would like them to understand that with the condition can also come with depression, anxiety, low self esteem, obsessively checking the skin or taking photos, the constant researching for a "cure", the panic that you may have a flare up out in public or how people will react to your skin, the grieving of your old skin. I was diagnosed with body dysmorphic disorder after my rosacea diagnosis because thankfully I saw an amazing NHS dermatologist who understood the emotional impact and how much I was suffering.
You've summed it up so well. I understand why doctors want to focus on the physical symptoms and try to deal with them, but with rosacea the psychological and the physical are inextricably linked. I could do everything 'right' with my skin, but the moment I'm stressed, all hell breaks loose! You have to discuss and tackle both sides of the condition to have any hope of helping it
I do understand why they are only focusing on the physical symptoms, just like they would if you go in with a rash. You focus on how to get rid of the rash and job sorted but that isn't how rosacea works because the treatment isn't that simple. I think that is what needs I wish doctors understood. Also the fact that is mainly affects the face making us feel vulnerable as that is what people will see when they see us.
I wish they would look at rosacea holistically rather than just saying it's incurable end of conversation. I've experienced a reluctance from many gp appointments to even prescribe any antibiotics or topical creams to ease symptoms and only one GP has made suggestions about lifestyle choices.. this was a more recent one and I've been back and forth for 16 years!! there's just not enough knowledge is my experience sadly.
I do find it wild that there are so many medical professionals with such outdated education levels. I appreciate that they can't stay up to date on every single condition, but if someone is coming to you for help and you're saying 'there's nothing we can do' at least make sure that's actually true!
I have Neurogenic Rosacea- a lesser known and very rare type of Rosacea. I wish that doctors knew about it period. I wish doctors knew how deeply traumatizing it is to experience it. I wish doctors listened and had compassion. Luckily I have a couple of doctors I’ve been working with who are empathetic and understanding but most doctors don’t take it seriously. They tend to minimize the physical and emotional pain it causes which is demoralizing and upsetting as a patient experiencing a debilitating physical condition. I wish there were more doctors specializing in rosacea specifically.
I wish they understood how demoralizing it can be, to the point of making a person reluctant to go out in public. And to then say, "It's not that bad" and quickly finish the appointment.
All of the above! I have experienced Drs just looking at a tick list, shrugging their shoulders and saying if x doesn't work, off to dermatology you go. The attitude seems to be, well it's just skin, you should get some nice tinted cream and all will be hunky dory
I wish that dermatologist should have psychological knowledge, or psychiatric has knowledge about chronic diseases, because rosacea really tiring us mentally, and we need moral support than physical, as we don’t have any control about rosacea flares up , but if you are strong mentally we won’t suffer at all from the physical appearance, lately i saw many rosacea strugglers but they are doing a good job socially, by interacting with people and growing businesses and even they are public speakers eventhough they are blushing but doesn’t stop or disabled them from living their real life , i hope that we can be strong mentally to overcome any rosacea depression and anxiety
I also have NR, I'm currently housebound and can't even take my kids to school by burning is so severe, I've been in a permanent flush since Oct 23 I failed esa assessment and scored 0 on pip, no way I can work. I have no financial help from dwp and even worse I have no medical help since my doctor (Proffessor Antony Chu) retired. My new derm knows nothing about NR (and is head of dermatology at the hospital) I'm left to get through each day on my own, in my own burning hell. The pain nr causes me is 100% not taken seriously by my GP, dermatology, dwp . I sit in front of a fan 24/7 and hold icepacks in a sleeve to my face all day (cleaning my teeth, going to toilet, trying to get dressed) if it wasn't for my kids, husband, sister, mum and dad - i probably wouldn't still be here.
My answer: I wish they knew how much courage it takes to even make that initial appointment. That asking for help is hard, but asking for help when it's something that many people dismiss as a vain or superficial issue is even harder.
I wish they would understand the emotional impact it causes especially when you are first diagnosed and are trying to come to terms with a lifelong condition. I would like them to understand that with the condition can also come with depression, anxiety, low self esteem, obsessively checking the skin or taking photos, the constant researching for a "cure", the panic that you may have a flare up out in public or how people will react to your skin, the grieving of your old skin. I was diagnosed with body dysmorphic disorder after my rosacea diagnosis because thankfully I saw an amazing NHS dermatologist who understood the emotional impact and how much I was suffering.
You've summed it up so well. I understand why doctors want to focus on the physical symptoms and try to deal with them, but with rosacea the psychological and the physical are inextricably linked. I could do everything 'right' with my skin, but the moment I'm stressed, all hell breaks loose! You have to discuss and tackle both sides of the condition to have any hope of helping it
I do understand why they are only focusing on the physical symptoms, just like they would if you go in with a rash. You focus on how to get rid of the rash and job sorted but that isn't how rosacea works because the treatment isn't that simple. I think that is what needs I wish doctors understood. Also the fact that is mainly affects the face making us feel vulnerable as that is what people will see when they see us.
I wish they would look at rosacea holistically rather than just saying it's incurable end of conversation. I've experienced a reluctance from many gp appointments to even prescribe any antibiotics or topical creams to ease symptoms and only one GP has made suggestions about lifestyle choices.. this was a more recent one and I've been back and forth for 16 years!! there's just not enough knowledge is my experience sadly.
I do find it wild that there are so many medical professionals with such outdated education levels. I appreciate that they can't stay up to date on every single condition, but if someone is coming to you for help and you're saying 'there's nothing we can do' at least make sure that's actually true!
I was put on antibiotics for 10 years by my surgery and then they changed their minds and made out the antibiotics were my idea!!
I have Neurogenic Rosacea- a lesser known and very rare type of Rosacea. I wish that doctors knew about it period. I wish doctors knew how deeply traumatizing it is to experience it. I wish doctors listened and had compassion. Luckily I have a couple of doctors I’ve been working with who are empathetic and understanding but most doctors don’t take it seriously. They tend to minimize the physical and emotional pain it causes which is demoralizing and upsetting as a patient experiencing a debilitating physical condition. I wish there were more doctors specializing in rosacea specifically.
I wish they understood how demoralizing it can be, to the point of making a person reluctant to go out in public. And to then say, "It's not that bad" and quickly finish the appointment.
All of the above! I have experienced Drs just looking at a tick list, shrugging their shoulders and saying if x doesn't work, off to dermatology you go. The attitude seems to be, well it's just skin, you should get some nice tinted cream and all will be hunky dory
I wish that dermatologist should have psychological knowledge, or psychiatric has knowledge about chronic diseases, because rosacea really tiring us mentally, and we need moral support than physical, as we don’t have any control about rosacea flares up , but if you are strong mentally we won’t suffer at all from the physical appearance, lately i saw many rosacea strugglers but they are doing a good job socially, by interacting with people and growing businesses and even they are public speakers eventhough they are blushing but doesn’t stop or disabled them from living their real life , i hope that we can be strong mentally to overcome any rosacea depression and anxiety
I also have NR, I'm currently housebound and can't even take my kids to school by burning is so severe, I've been in a permanent flush since Oct 23 I failed esa assessment and scored 0 on pip, no way I can work. I have no financial help from dwp and even worse I have no medical help since my doctor (Proffessor Antony Chu) retired. My new derm knows nothing about NR (and is head of dermatology at the hospital) I'm left to get through each day on my own, in my own burning hell. The pain nr causes me is 100% not taken seriously by my GP, dermatology, dwp . I sit in front of a fan 24/7 and hold icepacks in a sleeve to my face all day (cleaning my teeth, going to toilet, trying to get dressed) if it wasn't for my kids, husband, sister, mum and dad - i probably wouldn't still be here.
https://open.substack.com/pub/yanpan0508/p/my-ultimate-birthday-wish-a-self?r=ad7en&utm_medium=ios