28 September, 2012

Rosacea and relationships, the score so far..

Second year of skin trouble, using make up to cover it all.

I don't think any normal, relaxed, problem solving partner will initially see rosacea like an impediment for a normal, exciting even relationship. No one seemed to with me at least, initially. Because why would rosy (read: red, burning) cheeks be anything more than an inconvenience? And what guy doesn't like the challenge to look after a girl he likes, when she feels a little bit off or sick? But it can bring a multi spectral challenge to the table. Or well, that was my experience at least. 

          1998 - 2001

When my rosacea hit I was 19 and in a sort of serious first time relationship with a nice guy. He was well educated, slightly older than me and we went on travels a lot. We also went out to dinners a few times a week and to a lot of parties. I just started at university and everything seemed great. I noticed that he was really fond of me and proud as well. He commented me a lot on my looks, but more so we shared a real passion for travels, study and for endless discussions. It was a good time. When I started to get unexplained burning and flushing, and all the troubles that I described in the first posts began, he tried to be helpful and flexible. He felt for me and I could see that he felt helpless most of the time. I could sleep with the window open at night, but he did moan about it a bit with time and wanted to sleep in separate beds, with extra blankets. He initially went with me to health shops to look for 'allergy' free foods, but that soon became a bit of a bore and a hassle. I never drank much, but even one glass of white wine would tip my flushing off the scale now. So I started to avoid that as well. The restaurants we went to came more or less under scrutiny. Spices were a problem and because I had no clue what was going on with my skin, I just wanted to avoid any allergy related food item all together. No more tomatoes, garlic, spices and cheese for me.

I went from bubbly and cheerful and relatively care free to the worrying type who was occupied with solving the riddle about the red face and skin rashes most of all. More than focusing on studies even. Anyone here familiar with rosacea and flares might know that the triggers can be anywhere; sun, heat, perfumes, chemicals, food items, stress, too cold/too hot, emotions. It's overwhelming. I hád to solve this and my general interest narrowed down because of that as well. I liked to talk about it a lot and got anxious over it. Not only because my skin looked red but far more so because it felt on fire. But there were also periods when I felt good again. When I avoided my triggers for instance. A recipe for manic obsession, back in those early days, these constant fluctuations and uncertainty about what triggered them exactly.

Needless to say perhaps that all this had some effect on the relationship. Before, I used to care about other, more interesting things like my studies, movies, books, music, the Middle East problems, religion or the American elections, you name it basically, but all that was of lesser importance now. And soon I realized that to him, I was perhaps becoming a bit like music record that got stuck somewhere half ways, and he politely kept listening but I didn't really reach him anymore. I could almost see him thinking: where did the old her go and what the heck... Of course that made me feel even worse. Some days he would come over and take me on a car ride through the countryside. Listening to music, talking a bit, just, driving in the middle of nowhere. Simple but a lot of fun, very relaxing. We still traveled a lot or went out for meals. But it was not working out after 4 years. He is a restless type who was always traveling or working, he lived in different cities at some point. By the time we called it quits he had already lived in Paris for 6 months and was then living in Amsterdam, about 300 km away from my home town. I at least was doing a bit better again by then, rebuilt my life a bit and saw it was going nowhere steady with him either, neither from my side. Despite the great fondness and all that. We're still amicable.

2002 - 2004 / 2006 - 2007

During holiday Turkey
So I was single again by 2001. I tried to keep myself occupied with work and studies and friends. However, I started to go through what seemed a period of slight remission of rosacea. Still thought I was suffering from some mystery allergy by then, when I met another (Scottish) man about a year later. He was the opposite of my ex; head over heels, full on energy and dedication. No weekend meetings or living separate lives with him. I had a brilliant year, where I threw all diets out of the window and enjoyed concerts, pub time, dinners and just uncomplicated starting up time. He took me everywhere, introduced me to funny friends from Ireland and England and Scotland, with a positive care free attitude. He spoke the world of me. Then, a year later, we went on a holiday to Turkey. Being a control freak by now when it came to my skin, I checked with a doctor friend about vaccinations. Bf 2. said no, don't take them. Doctor friend said: yep, better be safe than sorry. Boy did I regret going with his advice. And not only because bf 2 was pretty p*ssed off for ignoring his advice. Soon after taking the Hepatitis A. vaccination my face started to burn again. I had already told him about my struggles in the years before and how I was scared of even taking the pill, to mess things up again. He was sympathetic but had no clue basically what I was on about. And I couldn't blame him for that either. Who would, without being in such a situation themselves? So after the jab I started to feel the flushing and burning coming back again. But the new wave of rosacea troubles ignited in fact from a chemical cocktail of several factors. Firstly the vaccination jab (perhaps triggering some immune response or something), secondly a coil I had fitted. I wanted a hormone free one, as I expected hormone changes to be a trigger too, especially synthetic progesterone.

In the hospital they perhaps had to get rid of some Mirena (hormone) coils, or hit their tax for them or something, but the Ob/Gyn managed to talk me into getting that one after an hour of debate. Promises were even made that much redness (saying it was about the burning pain didn't register really). I would be fine he thought. That none of the hormones of this coil would enter my blood stream (wrong!), that this coil would not give me hormone related skin problems (wrong) and it wouldn't hurt either (ouch!). Within a week I had acne and facial flushing right back where I left it a year before. I had it replaced by a copper one a few weeks later but the fire was already reignited it seems. Then, the holiday itself was a huge problem, as there was a heat wave in Turkey and temperatures were soaring over 50 C. (122 F.). Even the Turks themselves stayed inside all day. Of course, being silly tourists who paid their savings for the trip, we couldn't stay indoors all day (although I wanted to hide in the refrigerator for the rest of the week if I could) and we went out anyway. I was already spotty and rashy when embarking on the trip, but I came back in red hot agony. I mean, we also had a good time, we did fun things, I forced myself to stop worrying and not ruin his holiday in the process. But nevertheless I had this worrying feeling that things were getting worse again with the health issue I had no name for by then. Bf 2 didn't understand why I was so stressed out and didn't see I think in hindsight that the amount of stress I had during the holiday (practically all self induced), mostly because I could almost foresee that this new flare wouldn't just subside again like it had before, was far from beneficial either. Stress just messes my immune system up and makes me flare 10 times worse. It wasn't mere restlessness, it was the type of stress that left me shaking almost. I called my sister often for some words of support. She was the only one, apart from my dad, who took me seriously in this and who I could always tell about it. She did a studies to become a beautician and she would clinically treat the paps I had by now, and hear me out about my worries.

When we were back home, things didn't improve, and got worse instead. I was still stressed, bf 2 was pretty annoyed by now with it, understandably, and said that he didn't recognize his girlfriend in me anymore. What was I on about? Why was I wallowing in this? The moisturizer I used to use (Biotherm sensitive skin) started to burn and when I changed it into something milder from the health shop, things got even worse and I had bright red flushing about half of the time now. When my face was less red, it still felt very painful and tight and like I had acid poured on it. I visited the GP and she said I looked healthy and that there are many people with rosy cheeks and to live with it. I was upset, tried to explain how it wasn't the look of it that bothered me so much, but the constant burning and throbbing and sensation of intense heat in my face. She brushed it off and I sobbed a bit, as my dad sat next to me, also unable to get through to her. I tried all sorts of creams, thinking now that I would be back to calm skin again as soon as I found the right moisturizer. At some point my mum thought I was only making it worse by all the experimenting. I literally went to every make up shop in town for tests for moisturizers, explaining that I needed something as neutral as possible. Everything made me glow beyond cuteness. Going out to fun places became a nightmare, I brought cold packs with me to cool my face or even the small mini fans that bf 2. bought for me. They made such noise that it seemed as if I was about to take off in a plane. All of that could have been funny, perhaps, but I was failing fairly miserably to be the same joyful person to others as before. It wasn't the way it looked at that point, if it ever even has been about that, it was the constant sensation of burning and the heat that every flush brought, and me wanting to go out and cool instead of being in a warm bar. Everyone sees you struggling, on top. It's visible that I have a red face, am uncomfortable about it and that felt like a huge pressure to me. Especially compared to my normal self, much more spontaneous and fun loving and upbeat. I thought that talking to people about it would help, but it didn't really.  Bf 2 went from caring to irritated and on edge fairly quickly. He would get really upset with me, saying I had to get myself together. When I varied my diet, or was acting erratic about one moment eating white beans every day, for instance, and a few weeks later radically stopping with eating white beans, he somehow made it all about him, fighting with me about how I constantly "changed the goal posts" and that I was obsessive and miserable to be around. Although he also helped where he could and said later that it just took some time for him to understand what was going on, and how he could help me get on with things. How to be supportive. That really changed for the better with time. But at this point, early staged still, I was told by him there were a million things that would be worse and millions of people worse off and that I was totally obsessed. Which was all true. But nothing about that made it easier to deal with the reality of that burned up face.

I had to stop looking in the mirror. Also, by focusing on it so much, I was only making matters worse he felt. I should do yoga and get some control over my mind, because then I could control the pain too. Perhaps I could meditate the pain away? I could smoke weed and perhaps that would help me relax and take the pain away? I didn't feel like that at all and when I did smoke it, just to show him that I was taking his advice seriously, I flushed violently all night from it. I know now what he was saying and what he meant and that he was even right in some ways. From his perspective, this wasn't such a big deal. But others usually can't feel what sort of pain you go through. And then the discussion quickly gets narrowed down to the way it looks. I can say now that this entire relationship ended up in a very negative, verbally abusive one. Looking back, you see where it all went wrong (I have kept diaries since the age of 8, so I have all the details still available in writing), but at the time I was clinging onto the little 'security' I thought I had with my relationship, and got used to the insults. For instance, when we met I was 50 kg (very slim) and my hair had my natural brown-blonde colour. By 2007 I had started taking anti flushing medication (and my life quality had gone up a lot!) but I had also gained some weight and I had dyed my hair blonde/reddish for my mothers marriage. Without asking him first! (yeah, for real, this was used against me for many months). Didn't I know that he hates blonde? And yet I still went on and dyed my hair! And refused to dye it back to brown. He fancied slim and brunette and now he had a "fat blonde", who was too "lazy" to get her butt to the gym, instead sat in the car to go everywhere. Mind you, I flushed all the time and had a life behind a ventilator, yet still managing to go to an office job at the time and leading a more or less normal life again. Who needs enemies with such a "friend". Also I was barked at that my rosacea made hís life miserable, with all the stupid rules and the no alcohol drinking by me ("BORING!") and all the other restrictions. For him in the first place (let's forget about the person actually burning up in pain every day and first hand enduring all those limitations, because he didn't drink a drop less over it, nor changed his own diet, so why was this even of interest to him in such a strong manner?). My little rosacea world was pathetic and restrictive and my ups and downs emotionally were also grating and boring. He has always been drinking quite a lot on weekends ("Well, I'm Scottish"), but now it was given another spin: he drank because of me! To escape this rosacea hell at home. At this moment in time I was actually in a good mood and happy with the effects of the medication I had finally found through Professor Chu to take the absolute worst off this flushing. I'd make a horrible mother, he also knew to tell me, because I am far too self obsessed. "And your own parents are nuts, so you got the wrong example". I was also supposed to just take in his "advise" and not talk back with contra arguments. ("Very un-ladylike"). "Making excuses, that's all it is". So just sit still and let that tsunami of trash wash over me, in other words. That was never going to happen, and I feel a fool for accepting that sort of nonsense for as long as I did. But in a life in constant turmoil over this ridiculous rosacea flushing, I desperately wanted to keep everything else stable. Which is hilarious in hindsight, as the last thing this relationship was, was stable. My mum in response said I was an idiot if I let him get away with this sort of treatment. Kick him out! (He still had his own rental place, so what was he doing at mine still?). She noticed that as soon as I was doing a bit better mentally and physically, he started to play up like this, cause stress and upset, so that I was back in the sick basket again. "A loser, who sees it necessary to make you insecure all the time, simply because he himself is insecure." It is frightening how such unhealthy relationships can be a sliding scale sort of thing, where you start to find the abnormal normal, once it happens often enough. Never again for me, since! Oh, and I wasn't fun enough according to him. He himself; he described himself as a "topper" (a star), with humour. He is just straight forward about what he thinks, no sugar coating. (That is one way to take accountability for being rude). I have stacks of diaries detailing all the fights and drama of this relationship, but I'll leave it at this for now, as there was a steady stream of this sort of emotional tennis play going on. With regards to the rosacea; over time bf.2 started to see how much pain I had and that his way of approaching it resulted only in us fighting constantly and drifting apart. He spent more time alone with his friends, I withdrew myself more, he drank and smoked more. I resented him for all the things he didn't understand and apart from that there were many other factors at play which were not related to the rosacea. We broke up for a while, tried it again for a while, but it didn't work out. In this blog post you can read about a holiday to Turkey, at the end of our relationship.


2004 - early 2005

Bf. 3 was a very sour chapter. We had been friends for a while, although vague friends. I knew him through my best friend and we mainly chatted about art, music and general things. He sent me countless emails, always intelligent and interesting and sincere seeming, and he made it clear all that time that he was very interested and curious about me. Or something like that. I kept the boat off mostly however. Besides, he was well educated, a big guy, and although a bit cool in his manners, he was witty and sharp, but I felt he was too 'middle of the road decent' for me, if that makes sense. I'm not really ticking those boxes, as a partner. It didn't feel like a right match. And I was also worried that in reality, despite him claiming otherwise now, he wouldn't like to have to deal with a person like me, always bend down under my skin disease. But he stayed in contact, we went to an exhibition once, I confided in him about my skin problems and he listened and said serious, sensible things about it. He wanted us to give it a go but I kept it off, saying I had a relationship and that I had too many health issues besides that, and we had no more contact for a year. When bf. 2 and I broke up, I saw him again by surprise (yes, really) at a festival. He later sent me an email with the invitation to come to his town for a day out. I again told him how my skin problem was a massive issue still and how I didn't feel confident to come over. He called and listened for a long time and told me that he realized all this and that I shouldn't fill things in for him and trust him. How did I know that he wouldn't be caring and patient and loving or couldn't cope with it? He would help and console me and all that, if only I gave it a chance. After some visits, I decided to give things a try. To cut the details and go fast forward; after a good start, things became strained soon enough. I couldn't really fit into his idea of a gf. I felt that as soon as the novelty wore off for him, the rosacea did become a problem, again. He didn't like how I wanted the window open, even during the winter. Although he really courted me for some time, he started to feel uneasy when we went somewhere together and I brought my cold packs. Or didn't eat normally, like the rest of the group. He probably also didn't like that I looked like a lobster and went all silent in groups as a result. From my part, I started to feel locked up and down when around him.

In December of 2004 my middle sister, the one with the endless patience and care for me and my skin, died very unexpectedly of an appendicitis. The doctors overlooked it. We were all in shock. January of 2005 I had the IPL with Dr. Patterson that went so terribly wrong, as written down before. Bf. 3 was even less supportive and caring after that. To cut the crap, it didn't work out, not a great match nor a great experience. Luckily ever since I had much better experiences with relationships and men but those are for another, happier chapter.

I wrote some things about one of the rosacea forums too at the time, where the relationship was mentioned in passing. One entry:

Feb 22, 2005

Rosacea is not contagious right?! Boyfriend starts having rosacea signs after 6 months with me.. Nasty but inevitable warmth-experiment coming! Something weird and concerning has happened. My boyfriend has been extremely considerate and sweet with me and my, pretty extreme, rosacea-needs the last 6 months. Although he is half Indonesian and used to `normal' temperatures (20 degrees and higher) he has not made a problem sitting in the cold during the day with an extra sweater and sleeping in the cold with an extra blanket. BUT: I started to see recently that his normal tinted, great looking skin started to get red blushes in the morning. And since it is very cold here the last months he has blushes (!) when were in normal temperatures with others as well. He just called me from work, were people commented him about his unusual rosy cheeks and said that he doesn't like this development. He thinks that the extreme temperature changes are due to this: his blood vessels are overcompensating while in warm environments after being used to the cold in his house now I'm here. He doubted that rosacea is contagious and that he might have an bacterial form of it through me, but yesterday he said his cheeks felt a bit sore as well. I am terrified of course! Just this morning I was daydreaming before getting out of bed how wonderful this guy is through this very rough skin times for me and how wonderful it is I can sit here normally, watching a movie with him etc. without getting completely overheated.  His plan: slowly increasing temperatures to more normal values. At least he has to find out if his rosy cheeks will go away for him in normal and more stable temperatures and he also thinks it might be good for me. I warned him that too high temperatures are just no option since my rosacea is already so advanced and my vessels are so damaged already. HELP! I'm scared of what is coming: not only for my own skin, his health but also for possible problems between us! Has anybody else got experience with this?? 

On a side note: 
For all the male rosaceans here there is a shimmer of hope when it comes to dating:
"Most people would expect a ruddy face to turn off the opposite sex, but a new study claims women actually find redness sexy. According to researchers at the University of Nottingham, rosey facial skin in male monkeys, birds and fish has long been associated with mate selection and dominance - but they've now discovered red-faced men, such as Manchester United manager Sir Alex Ferguson, are equally appealing to potential partners. 'We have shown that increased redness enhances the appearance of dominance, aggression and attractiveness in men's faces viewed by female participants,' said co-author Ian D. Stephen." Etc

Ok, after some reading it turns out red is not good after all: 
"He said a male face which is red is attractive to women because it suggests good health and fitness. However, the findings show excessive redness makes men appear angry and aggressive in the eyes of women.'Very high levels of redness increase perceived aggression to the detriment of attractiveness,' Mr Stephen said. 'These differences may reflect a trade-off between the benefits to females of choosing a healthy, dominant male and the costs of associating with an aggressive partner.' In the study, women were allowed to manipulate the facial colour of computer pictures of men to make them as attractive, dominant or aggressive as possible, and most increased the redness to boost these qualities. As the face gets redder it is increasingly attractive to women because it is an indication of testosterone, good health and fitness, as there is more oxygen in the blood. But it can soon tip over in to aggression and, in extreme cases, anger."

Here are some rosacea forum topics about relationships and dealing with rosacea:
*Rosacea and relationships (LINK)
*Rosacea and dating (LINK)
*Dating/relationships and rosacea (LINK)
*Rosacea and relationships, advice? (LINK)
*Seb derm and dating (LINK)
*Dating for rosaceans (LINK)

Here are some interesting articles on having relationships while suffering from chronic health conditions and/or depression:

*Evan Marc Katz on finding love if you are depressed (and he is brutally honest here). LINK
*A couple talks about marriage and long standing chronic illness and depression. LINK
*Meredith Goldstein gives advice on dating when you have a chronic illness. LINK
Most links also have a good deal of readers comments below them, which I usually find as interesting as the central advice. Please scroll down this thread for links to forum topics on rosacea and relationships and dating.


  1. Hi, thanks for posting about your struggles with rosacea. I'm having similar problems and it helps to read about someone else's experiences.


  2. Thanks for your comment Carol. Glad my own struggles can help someone, it's a lonely disease to have for sure. Hug for you and best wishes

  3. Hi Scarlet. I have the same problem. I have always been extremely self-aware of my red face. Thanks God I can now cover it up with make-up but it is stuch a struggle to constantly check it in the mirror. I once tried a lighter make-up coverage and my friends instantly shouted "OMG what is happening to you? You are SO red!".. and for dating people, it's a nightmare. I would never go to bed without my heavy covering make up, I try not to put my face in the pillows, always having an arm underneath my chin so my cheeks do not touch the bedsheets. And then I have to wake up several times at night to check that my skin still looks okay and not absolutely red and steamy. People don't understand the struggle it is, always saying 'but you look so cute, and having red cheeks is lovely".. please. My cheeks are making my face disappear, it's terrible. I am starting a medication today, Inderal pills. Wish me luck.. Best wishes. Jen

  4. Good luck Jen! Clonidine helps me too, as well as inderal. I can so relate. You know that it's not great for your sensitive skin to sleep with a full face of make-up, right? But what else is there to do on a date with someone new, I understand. I also feel that my face disappears in a sea of bright red screaming cheeks when I flare. I try to not pay attention to it as long as it doesn't burn too much and just ignore it and get on with my things, but meeting (new) people is a true and utter nervous nightmare because of this. The few times a year I put make up on, it looks acceptable (but not smooth/even/natural) for the first few hours but later in the day it's so obvious that there are layers of foundation piled on a dried out face, that it looks positively ridiculous. I feel. Arrrghhh. Yes people don't understand// Until they stay over and have to sit in a cold room with a fan on. In winter :D Then they usually start to notice the gravity of this 'blemish'.

    Take care. Scarlet Nat


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