Ive been reading the posts on here since my diagnosis so I thought finally i’d introduce myself. I was recently diagnosed with lupus sle and anti phospholipid syndrome back in october, and I can’t say it’s been easy! I’m only 19 and currently studying in university in London, and although I’ve been feeling terrible for the past two years mainly (although arguably i’ve constantly been ill since i was young) the recent diagnosis and all the medication has really taken it out of me. I used to be busy all days of the week, going out multiple times and living a very social life however now I find myself barely able to make it to my lectures and leaving friends really disappointed. I just kind of want my life back, i was always in pain but somehow I used to push through.
I was referred to rheumatology early this year but with the long waiting times and all of that, it took me having a unprovoked DVT in may for my doctor to really understand the urgency of getting my referral done properly (they kept faffing about and not doing it properly)! Ive had multiple blood tests and results confirmed so now I am currently taking quinoric, prednisolone and currently being monitored on wafarin (i’m looking into being a self-tester as i’m on it for the rest of my life).
I’ve been reading the posts on here that have been super helpful about any side effects to look out for so that’s been great. I feel like everything is super intense for my body atm, i’m feeling like it can’t manage but I don’t just want to give up and lie in bed all day. I wanna go live my life but it is hard sometimes.
My main reason for making this post is that I really want to see if there are some other younger people on here who might be able to understand what i’m going through? For example i’m not able to drink, but with uni culture of drinking i’m finding it super difficult to socialise. Or if there is some kind of support group in London or something please could someone let me know.
Thank you for reading this it felt very good to get this all off my chest to people who understand.
Written by
lupeylady
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Welcome to the LUPUS UK Community Forum. I'm really glad to hear that you have been finding it helpful to read the other discussions here.
We actually have a support group for young people (16-26) with lupus which meets in London (near UCLH) every couple of months. The next meeting is this Sunday (8th Dec 2019). You'd be very welcome to come along if you were free? If you'd like more details or want to be added to the email list to be invited to future meetings of the group, please email me at paul@lupusuk.org.uk
Lupeylady, I’m not exactly young, but I feel for you! 🙏 At 19 I was living on the beach in Newport Beach, Ca., enjoying friends, the sun, and clubbing every night (though I wasn’t a drinker). Luckily I didn’t have all this going on at 19. And though I may have felt the first symptoms in my mid-20’s while starting a family, I was not aware that anything was wrong, so I didn’t fret. Five kids in 7 1/2 years, the doctors kept telling me ‘of course you’re tired!’ And kept chalking things up to being a young mom.
But you, you need to get back to having your life. Way too young to deal with this. Geez, I feel like I’m way too young to deal with this and I’m 61! 😉
But I promise you, as discouraging as it may all feel, don’t give up! You will find your ‘new normal’ and get back to enjoying life. Be positive, as attitude is everything. And don’t beat yourself up over feeling down. You have a right to. But deal with how your feeling, face your issues, and then put a smile back on your face and greet the world.
I find a lot of humor in what we are all going through (not 100% of the time, but most the time). I call myself part of the walking dead. I’m here, but I feel like life is going on all around me and all I can do is watch sometimes. But, it makes the good days great days, because I appreciate them more!
As far as drinking, I am LDS so I don’t drink at all. I found that when I was young and at work parties or neighbor parties, etc., people would ask why I wasn’t drinking, and when I would explain, they always responded positively. (LDS don’t drink, smoke, abuse drugs, etc., as a health law we strictly observe). So don’t let that hold you back from socializing. People will honestly respect your healthy choices.
All my best to you LL, and please keep us updated on how you are coping. 🙏
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