One of the reasons I continue to talk about rosacea online is because I remember how stressful, lonely, expensive, and confusing my early rosacea journey was. Every time I sit down to write a blog post, or share a photo, I think ‘What did I want to know when I was first diagnosed? What did I need to see? What support would’ve made a difference?’ So here’s a big one: how to prepare for your rosacea appointment with your doctor or HCP (Health Care Professional).
FYI, some of this blog post contains chunks of writing I’ve previously published on this site but I am sharing them here in one place for ease.
I have been banging the drum for self-advocacy for rosaceans for a long time. Rosacea is such a misunderstood condition and – unfortunately – just because someone’s a HCP it doesn’t necessarily mean that they are knowledgeable in every single condition or that they are up to date with their knowledge. I always recommend that rosaceans do a lot of research for themselves, whether that’s sites like rosacea.org, peer-support groups like mine HERE, or patient-led sites like the one you’re reading now. If you go into your appointment armed with knowledge you are in a better position to ask questions, direct the conversation to best serve you, and push back if you need to.
So let’s start with the basics:
Why do I need to go to the doctor?
It is very important that you get an official diagnosis. Firstly, you need to make sure that what you have is rosacea. There’s a chance that your skin condition could be something completely different and that, if undiagnosed, could get worse or cause more issues. Secondly, your doctor can give you access to not only other experts who can help, but also medication that may lessen the severity of your symptoms.
Why do I need to prepare for my doctor’s appointment?
I can only speak to my experience in the UK, but appointments with doctors are pretty short. There’s a lot to cover and, not only a lot of information to provide but also to take in in a short amount of time. From past experience – and from talking to thousands of rosaceans over the years – I know that it can be tempting to focus solely on the physical symptoms and either downplay or ignore the psychological symptoms completely. Hopefully this free download will help you to gather your thoughts pre-appointment and help to guide your conversation once in your appointment.
Some things to remember when you’re getting ready for your appointment:
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: The free download available at the bottom of the page has lots of space to take notes, but recording your appointment is particularly helpful when 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. But please remember that 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. 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.
Details about the free download
Now that we’ve gone through the basics, let’s talk about the free download I’ve created for you. It should be pretty self-explanatory, but just in case I’ve listed all of the sections below the download link and I have included notes to help you understand them. If anything is unclear, or you think anything is missing, please let me know.
I’ve designed the document to be printed double-sided. SIDE A is to be completed by you *before* your appointment, as it covers everything you might want to share with your doctor. SIDE B is to be filled in with your doctor *during* your appointment: it serves as a prompt for talking points and has space for notes.
Before I share the download link, I’m going to share my Ko-fi link. This is a site where you can ‘tip’ people to say thank you for creating useful content. I designed this download to help you and it’s free so I can help as many people as possible (alongside my website and social media filled with nearly 10 years of free-to-access content!) so if you wanted to support my work and say thank you, it would mean a lot if you did so through Ko-fi.
If you have any issues with the download, please email me HERE and I will send the file to you directly.
I really hope you find this download useful. Please do let me know if you use it, what your HCP thinks of it, if there’s anything else I should add to it, what other downloads you would like me to do.
HCP APPOINTMENT DISCUSSION GUIDE – notes for use
- Physical symptoms
- Redness – permanent (your face is always red and you struggle to identify flare ups or flushes because of this)
- Redness – intermittent (your redness comes and goes)
- Visible veins (also known as thread veins, spider veins)
- Burning; Itching; Swelling; Tight skin
- Eye irritation (burning, stinging, irritating, bloodshot, watery, blurry vision)
- Enlarged pores (sometimes described as orange-peel skin)
- Thickening skin (most common on the nose, but can appear elsewhere on the face)
- How long have you had symptoms?
- Things to consider: this can be the length of time you think you’ve had rosacea overall, or just how long the symptoms have been bothering you).
- Face chart – colour in or shade to show the pattern of your rosacea and where it is more severe.
- Things to consider: You can discuss suspected and confirmed triggers. If you’re struggling to identify your triggers, THIS POST (and accompanying free download) will help.
- Emotional impact of rosacea
- Things to consider – impact on: Confidence and self esteem; Work; Intimate relationships; Social life; Hobbies; Mental health.
- Things to consider: What are you using at the moment? What would they recommend you add to/remove from your routine?
- What have you tried already? Other things to mention?
- Things to consider: Tell them about any trigger management you’ve been doing (diet, temperature control, stress reduction, skincare changes, sun exposure, reduce alcohol intake etc.) Have you tried any medications for your rosacea previously?
- IMPORTANT: Think about if you want medication – it’s okay if you don’t!
- Things to consider: What are the medication options available to you? What are the side effects? What to expect? What is a realistic timeframe for changes? Will things get worse before they get better? How does it fit in with your skincare routine? Can it be used long-term?
- Things to consider: Are you a good candidate? Are you eligible? Different kinds of laser? What to expect? Can they do it or do you need to be referred?
- What’s next?
- Things to consider: Do you need another appointment? Will you need/can you have a follow up call? Will you need a repeat prescription?
- Additional support
- Things to consider: Do you need/can they give you a dermatologist referral? Do you want/can they give you a therapy referral? Do they have any further information to provide (leaflets, websites)? Support networks (online or in-person)?
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