10/1/2017 by Share Your Story

7 things I wish I knew when I was diagnosed with rosacea

Patient Jenn Adele K shares her experiences and offers advice to other patients living with rosacea.


Living with rosacea is sort of like having to learn a very exotic and rigorous dance, where one misstep at any point in time can mess up the whole rhythm and send you right back to a painful starting point.

There are things I know now that I wish someone had told me when I was first diagnosed with rosacea, aspects that if I had been aware of them then would’ve made learning the dance a whole lot easier.

1. Finding your own personal triggers is of the highest priorities, and it leads to the greatest improvements.

Very little was actually said to me about diet and environmental triggers when I was first diagnosed with rosacea. I remember the doctor saying red wine, spicy foods, and sunlight were problems. That was about the extent of it. The unfortunate reality is that, for most people diagnosed with rosacea, there will be numerous triggers. While some things are triggers for most rosacea folks, every trigger list will also be unique to the individual. And, avoiding things that flare you up is the absolute best way to prevent pain, treatment resistance, and disease progression down the road. The National Rosacea Society offers a very comprehensive 2-week trigger tracker that you can request online. Totally worth it! If anything, I’d seriously recommend requesting 2 copies of the trigger tracker, as odds are it will take about a month to find the bulk of your triggers.

2. Less really is more.

Rosacea skin, by and large, does not like to be messed with or bogged down by too many ingredients. Find yourself a good, gentle, daily cleanser and a well-suited moisturizer. Then be consistent. Some rosacea folks do best with washing twice per day, while others report a single evening wash to bring them the best balance. Do what works best for your own skin, but above all, be gentle and consistent.

NOTE: I have found that for myself, washing with raw honey and then moisturizing with 100% pure, organic aloe vera gel to be extremely helpful. I’ve also given up on make-up completely. For me, it was too much of a gamble with all those ever-changing ingredients.

3. Prescription medications can lose effectiveness or need to be changed over time, for some people.

I was one of the people for which my prescription medication seemed to lose its effectiveness… after about 3 months of proper use. I had to take a break from it for a while before trying again with a different application schedule. I also wasn’t a good match for most other rosacea medications on the market at this point, so finding a way to make my current topical work with the rest of my regimen was essential. I’m currently using topical metronidazole gel 1% only once per day in a very fine layer. This type of tinkering with medications until you find a way to make one work is actually not an uncommon outcome; I wish I could say it was. And, I really wish my doctor at the time of my diagnosis had told me that the odds of a medication not being the only answer were markedly high.

4. Low Level Light Therapy is a great place to start!

And, for rosacea folks I’m specifically referring to red light therapy… although I’ve recently added in blue light therapy, as well, to make my skin barrier more resilient (zero UV emitted). Not only is there no prescription or doctor’s visit required to get started (although seeing a dermatologist is still a must), but many within the rosacea community report that light therapy is very effective at relieving some, and in many cases all, of their symptoms over time. As a bonus, there is also an incredibly low risk of side effects! Sweet! And, light therapy does not lose effectiveness over time, as our bodies are hardwired to be receptive to a spectrum of light for normal and even optimal processing.

5. Getting too warm at night can cause a lot of discomfort and “heat activity” by morning.

And, in fact, getting too warm for too long at any point in time is a big no-no. Find a way best suited to you to keep cool. During the day, for me that can mean sucking on ice cubes, wearing a chilling neck wrap, and drinking plenty of water. At night, it means elevating my head higher than my heart while I sleep.

6. UV ray blocks and, by extension, heat protection measures, are very important.

Many rosacea patients can wear a good, high-level sunscreen. Alas, I am one of the few whose body will not tolerate any. If you find that sunscreens cause you consistent flare-ups, all is not lost. A big hat, a brightly colored parasol, sun shades in your car windows, and neck wraps are all viable options.

7. Exercise can actually decrease inflammation, as long as it is mild to moderate in intensity.

Your days of high intensity workouts are well and truly over when you have rosacea. But, exercise should still be a part of your daily regimen to help keep inflammation and stress levels in check. Moderate hiking, walking, biking, yoga, Pilates, and much more are still on the table.

NOTE: Just like with sleep, it will be important to keep your head higher than your heart while working out. This will definitely mean being selective about yoga and Pilates poses, as well as any stretches.

I hope sharing this brief list will at least be of some benefit to those newly diagnosed with rosacea and just starting out in the community. Rosacea is a complicated diagnosis to be given and can lead to a lot of frustration, but with time and practice, this dance can become fluid and even beautiful.

Jenn Adele K is an eclectic gal with a background in naturalist studies, artistic endeavors, creative writing, advocacy, and assorted homesteading activities. Rosacea is just one more aspect of her dynamic life.

What’s Your Story? Patients Rising wants to hear from you


Spread the Word:

You'll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.
The latest about patient advocacy

Join our Email List

Get notified about new stories and resources to empower patients and caregivers.