Over the years I have been very open about my experiences with the medical community with relation to my rosacea: I’ve had some awful experiences, some that could have been improved, and some absolutely wonderful ones. One of my main missions with my blog and social media has always been to be totally honest and provide the advice and support that I desperately needed as a 21 year old who left her GP appointment having been diagnosed and handed a cream with no information about this incurable condition. I felt alone, scared, and devastated. Over the past few days I’ve been compiling stories sent by my followers who were kind enough to share their experiences with me after I put a request out on my instagram stories. I speak more about this later, but this is not a criticism of the medical community overall, I just wanted to highlight real stories to show that there is a lot of room and opportunity for change. Talking to a stranger about our skin is an incredibly vulnerable experience and the way were are treated in that moment matters. I want to give you the strength and information to not only demand better treatment but then to go on to find the wonderful doctors and dermatologists that are out there and can’t wait to help you.
I wanted to share some of these stories but I also want to be very clear up front: I do not want this to scare you off going to your doctor. I do not want this to come across as a hit job on all doctors. I am highlighting these stories to show you that these experiences are NOT normal, they are NOT okay, and you do NOT have to accept this kind of behaviour. I have shared some tips at the bottom to help you self-advocate and hopefully make these types of experiences a thing of the past.
The first thing that was sad to hear (but not surprising) was that of the nearly 500 people who voted in my poll, 80% of them were/are nervous about seeing their doctor about their skin condition. When I asked why they hadn’t been to their doctor yet, these were the two most popular answers:
- MY COMPLAINT ISN’T SERIOUS ENOUGH: This was by far the most common response. Words like ‘superficial‘ and ‘trivial‘ were used. Others said “I don’t think they’ll take skin issues seriously” or “it’s not affecting my physical health so I feel like I’m wasting their time”.
- This idea that others were more deserving came up a lot: “I don’t want to take up time that could be used by someone with a real issue”… “I feel bad when there’s real suffering in the world”… “it feels trivial when the NHS is in such a mess”.
- SHAME: There are so many complicated feelings that come with skin conditions. The main one mentioned was shame: “I feel embarrassed and ashamed of my appearance”, “I don’t want to go to the appointment without make up”, “I was worried that they’d think acne is a teenage issue and the doctor would think I didn’t wash my face.”
I have personally experienced each of these concerns. I’m right there with you. I will share tips and advice at the bottom of this post that might help you shake some of these fears, but for now believe when I say that NEITHER OF THE ABOVE IS TRUE and a great doctor or dermatologist will allay those concerns immediately.
When I asked my followers to share their experiences with medical professionals I had hundreds and hundreds of replies. And I’m very pleased to say that many of them were positive – in fact most of the negative stories ended with a variation on ‘but then I asked for another doctor and now I have a brilliant one’ so please do not see the following stories as all doom and gloom. There is hope!
So let’s talk about the unfortunate negative stories that were shared. I am talking about these experiences because sadly it does happen and it’s better to be prepared. But mostly I am sharing them because I wanted to acknowledge how shocking and unacceptable this is. Because I genuinely believe that none of the doctors/nurses/dermatologists in these stories wake up in the morning and set out to upset people, but a lack of compassion, a lack of knowledge, and a lack of basic humanity is not something we should accept simply because that person is in a position of power and respect. You are allowed to advocate for yourself and you are allowed to stand up for yourself if you don’t feel that you are being heard.
I’ve split out the experiences so I’m not just sharing a wall of quotes with you:
- NO ADVICE GIVEN
- Some of the stories mentioned only finding out that they had rosacea because they googled the medication they had been given. Others were given medication with no advice on potential side effects or instructions on how to use it. Others were told that trigger avoidance was ‘basically pointless’ and there was nothing they could do to minimise symptoms (something that goes against all information and studies available to us). Another was told that she’d always have eczema so should just “get on with accepting it.” She was then put in a room by herself because she was ‘crying so much it would ‘disturb other patients.’” In no situation is this acceptable. Ever.
- MISDIAGNOSIS
- Just because something isn’t typical doesn’t mean it isn’t real: there were a few stories (mine included!) where the doctor believed it couldn’t be rosacea because it “only happens to middle aged white women” (Not true.) Another person was told “it was very unusual for someone my age (33) to have acne” so wouldn’t treat her.
- More alarming were those stories where doctors seemed to not even understand what they were discussing: “I went in for an allergic reaction and mentioned I had rosacea as well. She actually said ‘what’s that?’ and prescribed me steroids and said ‘it’ll probably sort out both.’”
- Many people who got in touch with me had experienced mental health issues alongside – and often exacerbated by – their skin conditions which made treatment a tricky issue: “My GP wouldn’t treat my acne because he felt like my depression and anxiety were making me disproportionately conscious of my acne. My current GP is great and accepted that it was more likely that it was my acne that was making me proportionately conscious of my acne.”
- MEDICAL PUSHING
- A big point of contention was the pushing of medication and a lack of interest in trying other options. Some reported being “ridiculed for wanting to manage with lifestyle” while another simply said “they don’t hear, don’t explain, and want to solve everything with medication.”
- INSULTS/HURTFUL COMMENTS
- This was the hardest type of message for me to read and even writing this section has brought me to tears. I’m just going to share all the messages as they came to me. Every one of these was said to a sufferer by a medical professional…
- “You won’t meet a guy with a red face like that.”
- “I showed him my face while crying and he said ‘yes but you are Irish aren’t you?”
- “A dermatologist laughed at me and told me that there are people with much worse skin conditions than me.”
- “I asked if I would ever be able to go make up free again and he said ‘well you won’t be winning any beauty contests.’”
- “My GP told me I was overacting and was obsessive and should try CBT.”
- “He said ‘it’s just a bit of redness, put on some make up’. It was so belittling.”
- “My first derm told me my rosacea was my own fault caused by wearing make up.”
- “The doctor told me I was being OTT about ‘a few pimples.’”
- “I went to a male doctor in NYC, he looked at my face and said ‘WHOA’ like he was disgusted.”
- “I was really happy with how my skin was progressing after an earlier appointment. I walked into the room and he said ‘Wow your face is so red!’ I’ve never felt so disheartened, I walked out of the room and cried in my car. The whole experience really knocked my confidence.”
- “I constantly felt I was being viewed as silly for being upset about not being able to use any make up or skincare – wearing lipstick had felt like a massive part of my identity and I was also about to get married and struggling with red sores around my mouth and eyes that I wasn’t allowed to cover. I really didn’t feel like the emotional aspects were taken into account.”
- “I was shouted at for wearing make up to my consultation – I tried to explain that I can’t leave the house without make up but was shouted down.”
- “The doctor said he couldn’t see anything on my face and that he was sure it would go away eventually. He sent me away with no advice or help. I was later diagnosed with rosacea by a different doctor who was wonderful.”
- “I told the doctor how depressed I was over my skin and that I had suicidal thoughts and his only answer was ‘have you tried make up?’ I burst into tears and ran out of the office.”
- This was the hardest type of message for me to read and even writing this section has brought me to tears. I’m just going to share all the messages as they came to me. Every one of these was said to a sufferer by a medical professional…
I want to take a moment to repeat what I’ve said throughout this post: The above stories do not represent the medical community as a whole. There are bad apples within all industries: people who are out of touch, don’t update their knowledge over time, lack empathy, or let their biases cloud their judgement. But none of the above stories are an acceptable way for ANYONE to speak to you, let alone a medical professional. I’ve included these stories to show just how much certain aspects of the medical community need to change. I’m not sure how that will happen – is it through patients standing up for themselves? Or through the many brilliant medical practitioners out there leading by example, or calling out shitty behaviour when they see it? Or is it for people like me to continue to bang the drum about skin conditions and the various ways in which we can heal and help our skin in the way that works for us, to drown out the shitty opinions of those who clearly don’t know what they’re talking about? I don’t know. I would love your thoughts on this in the comments below.
I wanted to end this (very long) post with some positivity and useful information. So here are my tips on what to do to prepare for your appointment, and how to deal with issues should they arise.
TIPS FOR PREPARATION AND SELF-ADVOCACY
(NB: I was inspired in some of these tips by the wonderful Susie from A Queen Of Her Castle. I love her.)
- PREPARE
- Write down what you want to say and practice it. Take photos of your skin to back up your point, I’ve been in the situation where my skin behaves perfectly on the day of my appointment so it helps to have proof. Avoid using words like ‘just’ and ‘only’. Do not minimise it. State your symptoms honestly without hyperbole.
- RECORD YOUR APPOINTMENTS
- This is particularly helpful if you are being given information about your condition, medication, or next steps. When I get upset my brain gets very foggy, so it’s great to have something you can revisit when you feel less emotional. Be sure to mention to your doctor/derm that you will be audio recording the meeting for your own personal use.
- THE MIND IS AS IMPORTANT AS THE BODY
- My biggest trigger is stress, so the impact of my rosacea is equal parts physical and psychological. If your skin makes you sad, if it affects your day to day life, or makes you feel suicidal this needs to be mentioned. There are also many people you can talk to over the phone or online if you feel overwhelmed. You are not alone.
- YOU ARE IMPORTANT
- I can understand the concern that a skin condition is not viewed as life threatening (although I don’t believe this to be true and have spoken about this HERE). When you go to the doctors, you are triaged – there is no one sat in the waiting room choking on a marble or waiting for their life-saving chemo while you talk about your skin. Your skin is the largest organ on your body and if there is something wrong with it, you deserve to be seen, treated, and spoken to with respect.
- MAKE UP WASHES OFF
- I have had many appointments where either I have removed my make up in the room, or the doctor/dermatologist has done it for me. You absolutely do not have to turn up to the appointment barefaced and no one should ask you to. Take a bottle of micellar water and some cotton pads in your bag and your make up will be off in 10 seconds max. You can do it while you’re introducing yourself and chatting through the issue at hand.
- THERE IS HOPE
- When it comes to rosacea there is currently no cure but that doesn’t mean there is no hope. There are many things that you can do to calm your symptoms and manage your skin. There is a lot of information HERE, but do not feel embarrassed to ask your doctor for advice on things that you can do to help your skin in the mean time. If you want to exhaust other options (trigger management, diet change, etc) before trying medication, that is your right and your doctor should support you and provide assistance.
- THERE ARE ALWAYS OTHER DOCTORS
- You are absolutely within your rights to ask for another doctor. If you feel like you aren’t being taken seriously ask for someone else. If they don’t seem to know much about your condition, ask for a referral to a dermatologist. If you think they are dismissing you or not listening then say that to them. Stand up for yourself. Push back if you don’t agree with what they’re saying (this is where your preparation comes in!) Complain about them if necessary. If no one ever complains about people who are terrible at their job, they will never be reprimanded and will continue to make people unhappy. Medical professionals are there to help you and if they aren’t doing their job properly, you have the right to tell someone.
This is such a long blog post, so thank you for sticking with me! I tried to cut this down but every part of this story is important. We need to share the experiences of others so that we can learn from them. We need to discuss the ways in which our journeys are difficult in order to make them easier. We need to support each other and exchange advice to build our collective strength. It may seem scary to self-advocate and stand up for yourself, but remember that you have me in your corner, as well as every single one of the people above.
The content on my site will always be free, but if you would like to you can buy me a cup of coffee or a slice of cake to say thank you. Ko-fi is a wonderful platform that helps you support the creators you love.
Lex
Looking for some next steps?
- Follow me on INSTAGRAM for lots of rosacea updates.
- Get more information on rosacea and my journey so far in my ROSACEA FAQ POST.
- Join my private rosacea FACEBOOK GROUP.
- And – exciting news! – I’ve just launched some digital downloads to help you get to grips with your rosacea: grab the Rosacea Trigger Checklist and the Rosacea Flare Up Diary.
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