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Discussion Starter · #1 ·
Hi,

I stumbled across this site after doing some general research and I was reading through some of the threads and found them inspirational and encouraging to say the least.

I will make this as brief as I can, I am 23 years old and I was diagnosed with Lupus when I was 17. When I was initially diagnosed I never really felt that I had the support I needed to come to terms with what was happening to my body. Especially being so young. I remember I had a massive bald patch on my scalp (Alopecia) and I was sleeping so much my teachers at sixth form thought I was not serious about my education because I would often fall asleep in class.

After begging my GP for a blood test because I was suffering from extreme fatigue, I was called into the doctors a day after I took the blood test and was told I should be hospitalized for severe anemia. The day I was finally diagnosed with Lupus, I had a biopsy of skin removed from my face (I have a scar which I still live with and makes me feel extremely insecure). The doctors then wrote down Lupus on a piece of paper, handed it to me and said "this is what is wrong with you!" and sent me on my way. I then was left to go home and search on the internet with my family to try and find out what this mystry illness was.

Everytime I lose hair I panic and become really down. It does grow back, although my last few bald spots have take almost 12 months to grow. I also get general loose strands from time to time. Does anyone else get this and do you have any advice?

I have now since been transferred to St Thomas' Hospital and I feel like the support I receive there is tremendous. However on a day to day basis I experience periods where I feel extremely depressed and angry. I feel like no one understands. Often I take my frustration out on the people I love because I am so worried about what turn the disease will take next. I used to be so confident and now I second guess everything I do whether it be work related or my relationship with my boyfriend. I was just wondering if anyone has experienced similar feelings and if you have any advice.

Sometimes I feel like I am a liability to people around me and always feel like my boyfriend should be with someone who is "normal" and healthy.

Help? :)
 

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hey,
im claire and i was diagnosed with lupus jus after my 18th birthday!! so i know exactly how you feel, the only thing i cant relate with isthe hairloss. but the whole situation with your bf, i feel exactly the same, im so insecure and worried that he will find someone more normal if u get me??
i also dont feel like my friends understand what im going thru i think they see me as a drama queen??
anyway, i no we're both young and i really can rlate to u alot so if u ever feel as tho u need a chat, give me a shout :)
claire xx
 

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Discussion Starter · #3 ·
Thanks Claire.

I know what you mean about being a "drama queen" sometimes I feel like I am bearing all my problems down on the people around me and Lupus is a deceiving disease. People find it hard to understand how someone who doesn't "look sick" is actually very unwell.

But thank you so much for the words of encouragement. Its helped me to realise that there are plenty of people that are also going through similar thoughts and feelings. ;) x
 

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Hi misse, I too have hair loss, at the moment I am Supporting a mighty fine comb over lol, My 5 year old grand daughter keep tickleing my bald patch and saying hey diddle diddle a hole in the middle, much to everyones amusement. I hope you soon feel better and keep your chin up.
x Jazzy X
 
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