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Emmiassa

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 #1 
Hi, I'm a 15 year old girl with discoid lupus erythematosis and I just needed somewhere to vent, so here I go.

Living with lupus hasn't been easy, especially since I think of myself to be a relatively "normal" girl. When I was younger, it was much easier as I didn't care about what I looked like. I just wanted to make friends and was pretty confident. People didn't care what I looked like and loved me for me.

However, growing up has had me question myself and has raised questions such as "Am I normal?" Since starting year 7 (which I believe is 6th grade in America) I've been asked about 3 times about what was on my face. On all 3 occasions I just ignored them because I didn't really care. I had and sill have a lot of friends and didn't care about what anybody thought. Although I was relatively quiet and reserved.

However, now, people are starting to like boys and you're probably aware of what high school drama is like. This and the media's perception of beauty constantly being thrown in my face has raised questions in my mind such as "will I be alone forever?", "am I ugly?", "is there a cure?" etc.

My lupus hasn't been getting better either as it just keeps flaring up. Sometimes I just stare at myself in the mirror looking at the scars on my face. However, I'm not depressed or anything.

On the contrary, my grades are very high and I'm aiming for Oxford or Cambridge university to study medicine. Furthermore, no-one from my year group has ever questioned my appearance and just want to know me as a person, which I suppose is a good thing. But, as some of you may know, the disease if very damaging psychologically. 

To conclude (if you were bothered to read this) I don't want to hear cr*p about the fact that your personality matters because I know that my personality is sh** (excuse me for my french haha) since I'm not that confident and I have been shy probably for nearly all my life. Yes, I'm lucky to have so many friends, but I'm worried about starting over and what I'm going to do when I go into the wider world, since I've always had people I've known since primary school. 

Thanks for reading my vent
Emmiassa x


Robinj

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 #2 
Hi
I read your post and wanted to respond even though I am an old lady!
I was diagnosed with DLE almost 4 years ago. What have you been prescribed for meds?

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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Emmiassa

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 #3 
Hi Robinj!

Since I'm under 16, in the UK, the first line of treatment is hydroxychloroquine, which has done nothing...

My mum rubs the cream on my face every day before I go to bed. 

Emmiassa [smile]
Robinj

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 #4 
How long have you been taking Plaquenil? It can take up to 6 months to build in the system before any improvement is noticed.
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Emmiassa

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 #5 
For more than I can remember. It's been years.
Robinj

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 #6 
I am glad to hear back from you! How are things going now?
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Ashaline

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 #7 
I don't have time to respond now, but I will soon.  I have a daughter your age with discoid as well.  We understand what you are going through.  Hugs and I hope to connect soon.
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