Dermatology, Rosacea, Dry Eye

Dermatology, Rosacea

11 People Describe What It's Really Like to Have Rosacea

No, it's not acne.

10/17/2021 9:37:00 AM

No, it's not acne.

No, it's not acne.

(often by certain foods, the weather, stress, or exercise), people with rosacea may notice their skin becomes bright red with a burning, stinging, or itchy sensation. They might also notice that their skin is overall more sensitive than others', which means they need to take special care in picking skin-care products that won't irritate their skin.

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Treatment for rosacea depends on the severity, but often requires some detective work to figure out your triggers as well as a carefully selected skin-care plan, includingprescription and over-the-counter products. Some people may benefit from antibiotics, medications that specifically target redness, or isotretinoin (Accutane). For others, just keeping an eye on their triggers can have a profound impact.

But the piece that tends to get overlooked in all of this is the mental health toll of dealing with a new skin condition—especially one that really has no cure. Below, we spoke with 11 people who have rosacea about how they were diagnosed, how they deal with their symptoms, and what they want others to know about the condition. headtopics.com

1. "It feels like a permanent sunburn and affects every aspect of my life." —AinslieCourtesy of Ainslie."My nose and the area around it are permanently pink. Sometimes my forehead flushes. Every day, at least once, my nose, cheeks, and forehead feel hot and red.

"I was diagnosed when I was 28. I had a combination of acne rosacea andseborrheic dermatitis. I didn't know what it was at first and I thought it would just go away. But after three months, it got pretty bad."I ended up going to the hospital because the wait to see a dermatologist was another three months. The doctors at the hospital didn't really seem to know how to deal with it. Eventually, my appointment with the dermatologist arrived and he knew what was going on. I was in shock and I couldn't picture living with it for the rest of my life. I went into denial about it, thinking that it would eventually go away.

"The hardest part is having to wear makeup every day, because there is never a time when parts of my face aren't red. I wish that I could just leave the house without having to worry about where I am going and what the environment will be like. It is inevitably going to happen in the winter because of the lack of fresh air and heating system in the house. Always in the evening it flushes. I have a very specific diet that I know helps it to stay under control. Stress is also a major factor, so I need to look after myself very well.

"[I wish more people understood] that it's really uncomfortable and feels like a permanent sunburn. It affects every aspect of my life, which is an added stress that doesn't make living 'normally' at all possible."2. "The hardest part is never knowing what my face is going to look like when I wake up." —Caitlin headtopics.com

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"My cheeks can sometimes look a little more flushed than normal (I definitely don't need to use blush!), and I can sometimes get small red bumps on my cheeks. Both the redness and the bumps seem to be concentrated towards the tops of my cheeks.

"I was diagnosed during a yearly visit to my dermatologist. I was actually there for a routine skin check (my family has a history of melanoma) and she noted that I have a mild case of rosacea. It definitely made sense—I just always thought I was rosy-cheeked!

"In general, I already have incredibly sensitive skin, so I only use Cetaphil's Daily Facial Cleanser to wash my face. I also use a prescribed gel on my face (daily). I usually either shower (and wash my face with the Cetaphil) or take my makeup off with Neutrogena's Makeup Remover Facial Cleansing wipes, and then put the gel on before bed. Both of those products don't aggravate my skin in any way.

"The hardest part of having rosacea is never knowing what my face is going to look like when I wake up! I haven't quite yet figured out what (if anything) causes a flare-up. It can be really annoying to wake up to random red spots on my cheeks. That said, I'm not walking around in a perpetual state of embarrassment! I'm just a little rosy. headtopics.com

"Everyone's skin is different, so what works for me might not work for others, but I definitely notice a difference if I forget to use the prescription gel."3. "I was hoping the medications would work, but they don’t." —MandyCourtesy of Mandy.

"[I was diagnosed] last year. I started getting red bumps on my face along with some dryness and red cheeks. The diagnosis was a doctor looking at me and [they] knew fairly easily what it was. It made me feel slightly helpless."I was hoping the medications would work, but they don’t. I tried metronidazole gel for the past year, but it didn't work. My face still gets a lot of red bumps, redness, and also dryness. I also tried doxycycline for a couple months and had no luck with that either. Right now I have just been washing my face with gentle cleansers and trying a hydrating mask at night to help with the dryness, but that isn’t doing much good either.

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"I get red bumps, some with fluid. I also have red face. The redness never goes away, and the bumps get worse at times. I try gentle cleansers and have tried many products but nothing seems to help. The hardest part is the fact that it never goes away and the flare up can happen within an hour."

4. "I didn't like the diagnosis, but it made sense." —Pam"I have red, irritated, and dehydrated skin as well as raised bumps with inflammation (but no pus). I was diagnosed when I was in my 20s but had some symptoms in high school. I always felt the need to cover it up with makeup.

"I didn't like the diagnosis, but it made sense. I ended up finding products that helped reduce the redness. My skin was very dry, so I had to work on hydration."My worst flare up happened in late summer of 2017. I went to a dermatologist and they prescribed antibiotics and other things that I couldn't afford. I opted to just do the antibiotics. I switched skin-care systems and got one that had SPF in it for protection. I try to stay with cool water when I wash my face and avoid any facial cleansers that dry my face, which can add to the irritation.

"I avoid being out in the sun. Additionally, I've given up spicy foods that can trigger flushing of the face. When I exercise, I avoid overexerting myself which can cause flushing. I drink more water. I now wear foundation with SPF when before I never wore makeup. I take cooler showers rather than hot showers. I no longer use artificial sweeteners as they were affecting my skin and contributing to flare-ups. I wish more people knew that it's a sensitive topic for people, and it may keep them from having a more active social life."

5. "My daily routine was never the same again." —DelfinaCourtesy of Delfina."I was diagnosed at 15, but I didn't have any serious symptoms until I turned 27. I was having serious rashes with [burning] skin. I was so desperate I'd do anything to feel better. After that my life changed. My daily routine was never the same again, and although I'm kind of used to it now, it was very difficult to accept that's how my life was gonna be from that day on."

Delfina tells SELF that the hardest part for her is being accustomed to doing certain things—going out, drinking alcohol, sunbathing—that can actually trigger rosacea. She finds people's reactions to her rosacea challenging as well. "They don't understand what [it's] like, and so whenever you have a rash they automatically say, 'Your face's red, are you hot? Do you feel ok?'"

Her advice for others dealing with a flare-up: "Try to ease your mind," she says. "Tell yourself it's just momentary and you'll feel better."6. "Please don't suggest I try acne washes and meds, they'll only make it worse." —Addy

"I was diagnosed nine years ago; I was having a problem with my right eye and my face was red. I had been to two ophthalmologists with no relief. My eye was getting worse—red, painful, and ugly. My primary doctor put two and two together and said my eye and face were connected. He sent me to a dermatologist who diagnosed me with rosacea and

ocular rosacea."I was relieved because the dermatologist was able to help me. But it was also depressing at the same time because there is no cure. Sometimes, I still get this feeling of unfairness. Why am I stuck with this? Why do I have to be red and get odd looks?

"The ocular rosacea has caused me to developdry eye, which greatly impacts my life. Also, I get [bumps] that look like acne. My face turns red and is rougher than it used to be. So I use preservative-free eye drops for my eyes. On my face, I don't wear makeup. I don't use much on my face except water. I occasionally use a moisturizer. If I stress too much I flare, so I try to relax. I take low-dose doxycycline if my face gets out of control.

"[The worst part of having rosacea is] the looks you get from others. They don't understand why my face is red or why I have what appears to be acne. It can be extremely embarrassing especially when it comes to dating or job interviews."I wish more people knew that those bumps on my face aren't acne. Please don't suggest I try acne washes and meds, they'll only make it worse. And I can't control the redness and bumps on my face. I'm embarrassed by them. You staring at me makes me feel bad about myself."

7. "It's not just harmless blushing." —LexCourtesy of Lex."I have redness, heat, itching, some swelling. I was diagnosed at age 21 (in 2005). I had no idea what was wrong with my face and had never heard of rosacea. My GP was fairly unsympathetic and dismissive. He gave me a cream that didn't work for me and made me feel vain and silly."

Lex tells SELF that since then, she's changed her diet, skin-care, and lifestyle to work around it (after a lot of trial and error). Still, the worst part is "feeling out of control," she says."I wish more people knew that it's not just harmless blushing, it can hugely affect your self esteem and confidence."

8. "It’s become a radar for my internal health." —DedeCourtesy of Dede."I have very pink skin and red nose with some pustules. I was diagnosed in my 20s during a routine skin check. I did not understand the diagnosis at all. Now I'm on a very low dose of doxycycline and am careful about the products I use on my skin.

"[I manage it by] learning what irritates my skin and finding make up that will work well with it and not exacerbate the flares. It’s become like a radar for my internal health—my skin alerts me if I have had too much sugar, not enough sleep, etc. So I’m thankful it keeps me honest.

"I can deal with the pink skin. But the hardest part for me is when the [bumps flare] and I look like I have acne, but it’s the rosacea. The extreme heat of Texas can be trying, but I’ve learned pretty well how to manage and do my best to stay ahead of it."

9. "I felt a relief to know that it was actually something and I wasn’t being paranoid about my appearance." —TanithCourtesy of Tanith."I booked a routine appointment with my GP and asked about my skin," Tanith tells SELF. They looked at it, diagnosed it as rosacea, and told her she could use an antibiotic lotion to ease her symptoms. "I felt a relief to know that it was actually something and I wasn’t being paranoid about my appearance."

"An antihistamine helps with the itch. I use an antibiotic lotion when I get a flare-up. I try to watch what I eat and drink as some foods can trigger a flare-up.""I can become very withdrawn mid-flare-up and makeup doesn’t always cover it very well. It can be uncomfortable when it's itchy." Tanith tells SELF she wishes more people knew that rosacea "isn’t just a rosy glow to your skin, and that it is uncomfortable. Those who suffer from it can become very self-conscious."

10. "After a tough workout, I look like I just had a chemical peel." —Casey"I was 18 and getting my makeup done for my sister's wedding when a makeup artist first told me that I probably had a rosacea, which immediately made sense. My face had always been more red and sensitive than the skin on the rest of my body. Even as a kid, my face turned bright red after a day at the beach, no matter how much sunscreen I applied (prompting the hugely unsympathetic nickname 'tomato face' from my family).

"For the next decade I basically just dealt with the redness, burning, and irritation. It was annoying, but it wasn't debilitating. I was more annoyed with the lingering acne that never really disappeared after my teens. (Spoiler alert: This was not acne—it was also rosacea.) I finally went to a dermatologist who suggested a super low-dose retinol. They told me it could be harsh on my sensitive skin (remember, I'm still largely ignoring my rosacea), but that it was great for acne and fine lines. Cool. After using it carefully for four months my skin was worse than ever—irritated and peeling with huge, red, painful bumps all over. The dermatologist took one look at me and told me to stop using it immediately and start treating the rosacea I'd been dealing with all along.

My rosacea triggers are basically everything good in this world: sun, caffeine, red wine, working out, etc. But they're also things that are pretty unavoidable, like stress or quickly going from cold to hot temperatures (which is literally just life in New York City for six months out of the year). I also can't use any products that my skin deems unacceptable, which means constantly turning down well-meaning suggestions from friends and strangers because I know how my skin will react. (I swear I'm not trying to be rude—but my face hurts just thinking about that DIY face mask.) I wear makeup almost all the time, because without it I tend to look blotchy and flushed. And I know that after a really tough workout, I will look like I just had a chemical peel (I wish I was exaggerating).

"Finally, I just started to accept—and explain to people—that I get really red and flushed in response to certain things. I've gradually found skin-care and makeup products that don't aggravate my skin, but it takes a lot of trial and error (and money!), and everyone's skin is different (bless you, Sephora return policy)."

11. "I still don't see myself when I'm not wearing makeup." —RoseCourtesy of Rose."I was diagnosed in 2010, but I first noticed the symptoms and was sure I had rosacea around 2003. I saw pictures of myself with extremely red cheeks. When I finally went to a dermatologist, he just looked at me and told me I had rosacea.

"It made sense—as I said, I saw the signs. On one hand I was relieved because maybe I could do something about the symptoms. On the other hand, I had researched rosacea and knew there was no cure. It was tough to accept having a skin disease when I

alwayshad clear skin."I tried to determine the triggers so I could avoid them. The dermatologist gave me azelaic acid (sounds horrible, doesn't it?), a topical gel, and a low-dose antibiotic. Now I'm using different topicals prescribed by my dermatologist and getting laser treatment. I use sunscreen when outdoors or just avoid the sun. I use scarves in the winter to avoid the bitter cold and wind. I cover it up with makeup.

"[The hardest part is] looking in the mirror every day and seeing a face that still doesn't look like mine. I didn't even have an acne problem when I was a teenager. I always had great skin and great color. I never wore foundation or blush. [But here I was,] in my 40s, feeling like an awkward teenager—just in disbelief that a skin disease made me look terrible.

"I started using foundation and blush sometime after the formal diagnosis just so I could look in the mirror. About 15 years have passed since I first realized I have rosacea. I still don't like the way I look, although the current dermatologist is helping me minimize the symptoms and improve my appearance. It isn't always so traumatic when I look in the mirror, but it's still frustrating. I still don't see myself when I'm not wearing makeup.

"[I want more people to know that], first, it's a disease and there is no cure. [My advice is to] get treatment for the symptoms as quickly as possible to improve them and keep them from getting worse. When the symptoms get worse, they become harder to treat.

"And know that health insurance companies don't cover all treatments. I am getting laser treatments to remove the capillaries and the insurance company classifies the treatment as cosmetic, so it won't pay for it. This is not about me being vain and wanting to look like a model. This is about me wanting to look like myself."

Responses have been edited for length and clarity. Read more: SELF »

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