Me- 24, female

Some people have Rosacea and some people have severe Rosacea so before you judge, you should know that. For the last 7 years I have had progressing ocular rosacea and skin rosacea. It is painful, uncomfortable and crippling.
I was a highly academic person, now I can barely use my eyes to read. I was pretty, now I can barely look in the mirror. I was very outgoing, now I can barely look a shopkeeper in the eyes.

What people don’t understand about this disease is that it is not about vanity. I have given up caring how pretty I would like to be, I’d settle for normal. I have constant mucus and painful redness of the eyes and my eyelashes are now falling out. You can’t tell me that there is no reason to be depressed.

I have had IPL,KP Laser, been on doxycycline, minomycin,low dose isotretinoin/roaccutane, had a colonoscopy to check for gastro links, had smart plugs put in my eyes, have used about 50 different eye drops some costing $100 a box. I used lidcare at least twice a day and hot compresses on my eyes. I also coat my face and lids in vaseline every night without fail, or I will suffer the next day. The only products I am not allergic to are cetaphil and at my worst I can’t actually wash my face even with water as my skin is so dry that it cracks and bleeds. If I try to fully open my mouth wide, my skin tears and leaves little blood blisters. Sometimes my eyes puff up and over so I can’t even see out. I don’t eat wheat, I limit dairy- no alcohol, no coffee, you name it. People say I eat like Madonna, all vegies meat and fruit- nothing from a box, can or processed.

I have been to the top dermatologists. My dad is a doctor and so he has accessed some of the best people for me. Some had closed their books and took me on because nobody else could help me.

I guess the purpose of this rant is not to ask for help but to open some people’s eyes to the varying severity of this disease. Some people have it mildly and the treatments help them- but for a lot of people THIS IS NOT A VANITY ISSUE. This is a life issue, a survival issue.

If it wasn’t, why else would a girl who loved people,life and just being normal, be sitting in her house for the last 12months- never leaving, just trying to get some help. Ordering food and anything I need to the door of my house and letting my Grandma go grocery shopping for me.

Yes,I do believe in God and yes I do pray everyday. I am not mad or bitter and people say it is amazing that I cope so well. Everyday I just get through, walk my dog at night when nobody will see me and live with my Grandparents. Thank God for them. Maybe if I can just be a good person and keep perservering God will do something, I don’t know why he doesn’t but I can see how this has made me a better, unsuperficial, compassionate person. I can barely watch Australian Idol without crying for the person voted off these days- THAT is how much this has broken me. If i got better, I’d only want to do good things for people but I feel like this can’t go on. The agony and the boredom of an idle mind, sitting here wasting away like a potato. A very sad potato. hah. Prior to this, I was like a machine- visiting doctor after doctor never giving up but it feels like I have no hope left.

Before you respond to people on this telling them that suicide is not a logical conclusion to severe rosacea, you should know how bad it can be. Just because you have a little bit of pink in your cheeks and can deal with it, doesn’t mean that other people aren’t suffering. So next time, listen to them and know that their complaint is not only legitimate, it deserves some compassion.
Thanks to everyone who has replied. I really appreciate the genuine responses. I just needed to vent.

To the guy who made the first comment, I’m not vain and I don’t ‘care more than other people’. I am tough. If you haven’t seen ppl with severe rosacea,or sight threatening ocular rosacea then that is because many of them don’t leave the house- not because they are vain- but because the sun, wind, fluro lights all exacerbate beyond bearability. I go for walks at night because sometimes I need to wear goggles.
I care about other people and I have seen other people’s suffering, in fact that was my job description before I had to stop work in February. I live on savings right now. I listen to other people’s problems and I care about other people suffering out there stuck inside or with chronic illness, so don’t tell anyone who is suffering that they should think about other people in worse situations. We are all people and our problems matter to each of us, there is room for everyone.
Thank you wee-bird, skye and gold.

Your story broke my heart wee-bird, I almost electrocuted myself crying on the keyboard! ha.

I’m really glad you got better anyway.

I have one more scan to have- I am seeing an endocrinologist who thinks there may be some hormone problem causing me to flush so much. I just got some negative tests back today from him which really sent me into a tail spin.

There are so many people suffering in their houses from all sorts of things.The only thing that keeps me going is hoping their is a positive reason for all this, that I will be so strong if I get better that I will be better than if I’d never been sick.

Thank you to everyone who replied again.