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Thread: 5 years into this nightmare...........

  1. #1
    Senior Member
    Join Date
    Mar 2012
    United Kingdom

    Default 5 years into this nightmare...........

    This week, the clock hits five years since my skin-related nightmare began, at least in its present form. I thought this might be a good time to get my ‘story so far’ written.....

    It started for me with a single spot, at the very beginning of June 2007. Actually, that isn’t quite true – I had suffered moderately-severely with ‘teenage acne’, but this had, so it seemed, been left behind. Although I never had ‘perfect’ skin and was often prone to slight spottiness, the state of my skin didn’t really cause me any major issues for maybe 8-9 years after my teenage problems receded.

    Then, out of nowhere, came that ‘single spot’ that I referred to, large and obvious, just to one side of my nose. I remember it well, as its timing was horribly inconvenient – the day prior to a significant function that I was to attend. But it went away and, being prone to the occasional break out, I simply cursed my bad luck and thought no more of it...............until another one popped up just a few days later. Then that too went away. And another came, and then another. And if I wanted to be really brief, I could easily just say.... ‘and so on for the next five years, to date’.

    At first, I thought it was just a ‘bad spell’. But it soon became obvious that it was something more than that. It just never stopped. This wasn’t something that started slowly and gradually worsened; it was straight into the deep end, overnight, from nowhere. Remembering my teenage problems (and treatments), I quickly went to my doctor, but this brought little relief. Somehow, I instinctively knew that the various antibiotics that they prescribed me would not be the answer this time.

    It was actually the best part of two years before a doctor mentioned the word ‘rosacea’ to me. This was probably because I suffer only with papules & pustules; in layman’s terms – acne. I have never flushed and do not have background or general facial redness. I have more recently developed a few spider veins, but they are very much at the margins of the problem. For me, it’s about spots. Or P&Ps as I’ve since come to know them. More specifically still, it’s about my nose. This is where 90%+ of my breakouts occur. More than that, there is something unique to my nose that causes the breakouts to be so much more severe, more inflamed there than anywhere else. Any fans of English/European football here may remember the goalkeeper Peter Schmeichel and his often terribly inflamed, red spotty nose. Whatever that is, that’s what I’ve got.

    Through my own research over the past 3 years or so, I’ve come to strongly suspect that what I have is actually demodectic rosacea. As I said previously, I’m subtype II symptoms only, which seems to set me apart from so many sufferers on internet forums, for whom flushing & redness are so often present; for me, that just isn’t the case. I don’t flush. The papules that I suffer from are patches of extreme inflammation, not ‘spots’ as such. They strike as me as some kind of allergic reaction to something. Demodex? I have also often wondered if it was really just a coincidence that this all started in the 6-9 months after I gave up a heavy smoking habit. At first I couldn’t explain this thought, it was just a nagging gut feeling. Then as I learnt more through research, I found that smoking may have wiped out any demodex in my system, due to the benzene, or another chemical present in the smoke. I strongly suspect that this is what happened in my case; My theory is that I have an underlying allergy(?) to demodex and/or their bacteria. 8-9 years as a smoker, which may have meant no demodex, and coincidently no problems. I quit smoking, and then a few months later my 5 year nightmare begins. There have been times when I’ve almost felt desperate enough to smoke again. It hasn’t come to that yet – I’m still searching for other ways of doing the same job. I long for the day a topical ivermectin treatment makes it to the market!

    In some ways, I’m lucky. Due to the nature of my symptoms, a good percentage of the time my face is relatively clear. Sometimes, it’s (more or less) completely clear. I’m grateful for this, as small a mercy as it sometimes seems. The downside is that, if I’m suffering a moderate or severe outbreak, I might struggle to be able to leave the house (my flare-ups look truly horrendous at their worst). Luckily, I work in a private office and have a fair amount of control/flexibility over my work schedule. Had I worked in a more ‘public’ or social position, I would definitely have run into employment problems over absenteeism a long time ago. Another problem is that a flare up can be upon me in a matter of minutes; I can go from clear face to running for cover after looking in a mirror ten minutes later (literally). It’s impossible/very difficult to plan any social activity (especially dating), due to the extremely high likelihood that my face won’t be in a presentable state by the day/time that the arrangements become due. I’m sure that this will be a familiar feeling to some extent for any sufferer.

    As much as I hate to be defeatist, rosacea (or whatever it is that I suffer from) has had a devastating effect on my life. I was 26 years old five years ago. Today I’m 31. I’ve been single for the last 4 of the 5 years to which I refer, and I don’t see that changing anytime soon – I just can’t bear the thought of anyone knowing I have this problem. I find it so incredibly embarrassing, not to mention confidence-crushing. I don’t want to remain single, I don’t want to allow this condition to have that kind of control over me. But unfortunately, in its present form, it does. The longest period of time that I have remained consistently symptom free in the past five years, is two months. I don’t like it, but I have to admit I have withdrawn, into myself and to some extent, from life. The phrase I often use is that I’m living ‘half a life’. My mother is the only person to whom I’ve disclosed the full extent of my problem. Yes, it isn’t life threatening. But it is certainly life changing.

    I do, however, retain some hope. I believe that there IS an answer out there. I won’t give up this battle. I want these five years of suffering to inspire me to finding the answer, for me. I believe it’s out there – I believe for me, that I was symptom free once, and I can be again. So that's about it! Thank you and best wishes to anyone who has read what I am sure is a total ramble, but that hopefully carries a little bit of hope in it too.....

  2. #2
    Senior Member
    Join Date
    Sep 2009


    Thanks for sharing your story, I feel your pain. It's amazing what this stupid condition can do to us and how it can change our lives.

    Intially I was very secretive about my condition and didn't want to tell people but eventually I started to talk about it more and more and let people know what's going on. I've found talking about it to be a bit liberating. What I didn't realize is my going out less with friends and hiding in the house made them think I didn't like them. They thought they had done something wrong to make me want to stay away. So now they understand and accept my condition and how at times I just want to be left alone.

    As for not dating, I understand your fear but there are many people out there with issues that they struggle with be it weight, baldness, height etc and they may not care much about your rosacea. For you it's a big deal but they may see it just as part of who you are and not be turned off by it. There's lot's of lonely people in this world and I'm sure many would be just fine dating a rosacean.


  3. #3
    Senior Member
    Join Date
    Mar 2012
    United Kingdom


    Many thanks for your reply Dave.

    I think one reason I sometimes get so down is, I won't allow myself to accept this thing. I'm fighting it full on, and my aim isn't simply 'improvement', but complete victory. I've often thought, I'd probably make it a lot easier on myself if I worked on accepting it, which in turn might help socially. But would acceptance lessen my will to fight it?! I don't know. But I don't think I'm ready to give up just yet!

    Either way, this board is a great help, both in terms of factual information and just simple support. So thanks again!

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