Hello, I am 18 years old and have recently been diagnosed with Lupus. Every website tells me the negatives of having lupus and it’s getting me extremely down, I feel like I’m never going to have a normal teenage life like before and I’m stuck on what to do :(
Welcome to our online community! It's always great to see new people joining, and you are absolutely in the right place for help, support or just a good old chin wag- there's always someone here to talk!
I myself do not suffer from Lupus, but I was diagnosed with JIA at 6 and am now 33 so have lived through the teenage years and young adulthood feeling a bit 'different' to everyone else (besides the random coloured hair that I had every week) I understand that it can be daunting when you think about whether you will have a normal teenage life, especially if you feel that you are not entirely sure what you are about to face or that everything you hear or see is negative. It's easier said than done- but just keep going. We are all here for you and although you might feel like you're not living a 'normal' teenage life, the life that you do lead will be the norm for you and you will absolutely own it!
Here is a story that was shared by someone who has lupus- sometimes the experiences of others can help you along:
There is also some information from our website here which could shed a more positive light on things- there are a few different self help tips there too:
Please do just keep talking to us- as I said, there is always someone here willing to listen or share their experiences. You will never be alone here on the forum!
Thank you for posting on the helpline forum. I’m sorry you’re feeling down and stuck but I’m so pleased you have reached out to us for support. It’s not easy to take that first step, but it’s so important.
As Sarah says, you’re never alone on the forum and we’re here to support you. As you’re so recently diagnosed, you must have so much to get your head around and so many questions! The first thing I would suggest to help you to become unstuck, is that you give us a call on our freephone helpline: 0800 5200 520. It’s completely confidential and we can tailor our support to fit you and your needs at the time.
Our Young People and Families service offers a range of services to support young people and their families. You can find out more here (I'm not sure which nation you're in, so pop your postcode in and scroll down to the information for young people - there's a lot going online at the moment) and you can find out more by contacting our YPF team via [email protected].
Arthur’s Place is another really good source of support for young adults with arthritis (and related conditions like lupus):
I hope this is helpful and I do hope you will consider giving us a call or emailing our YPF team directly. We're here to support you through this.
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