SLE with Sjögren's syndrome

[Butterflyer]

I was diagnosed with SLE when I was 15, I'm 19 now and I get flares like twice a year. I was diagnosed with Sjögren's syndrome too a few weeks ago. This year has been pretty bad, worst of my years of experience- not so much physically but mentally. I've never been comfortable talking openly about lupus but I've finally decided to post here and I'm feeling good about it.

[whisperit]

Welcome tsheringk!

Good to hear from you, although I'm sorry that you have had a bad time recently. Hope you will stick around and post whenever you have a question or an experience to share. x

[Butterflyer in reply to whisperit]

I just want some help on how to manage the emotions. I don't want to be a burden to the people who are only trying to help me everyday

[whisperit in reply to Butterflyer]

That seems perfectly reasonable. I think most of us here are all too familiar with how hard dealing with these conditions can be, emotionally and mentally, as well as physically.

PS - did you change your name since your OP - or is it me!? x

[Butterflyer in reply to whisperit]

I just changed my name ! Haha don't worry it's not you!

[DaddyzGrl in reply to Butterflyer]

Butterflyer,

I'm twice your age plus a few more. And I understand that you don't want to be a burden, I feel like this too, but you can't get help from others if you don't make them understand your struggles. You are not alone. I wish you the best.

[Hidden]

Welcome here Butterflyer. I am certain I have had Sjögren’s and hypothyroidism since I was about 9, when all my hair fell out and my eczema went into orbit. After that it was just a succession of eye infections, dental problems, dizziness, hair loss, blood poisoning from itching infected eczema and lots of dry coughing (reflux), UTIs, severe allergies and chest infections.

But I was only diagnosed with autoimmunity about 16 years ago and only diagnosed formally with Sjögren’s last year. And I’m 54!!

It’s an awful lot to have to come to terms with for you I know. But at least the treatments, knowledge of what is wrong/ having named conditions will hopefully stand you in very good stead for getting your autoimmunity under good control.

I think I’d be a lot more healthy now if I’d known back then what was wrong. Instead I was just told it was neurosis/ anxiety. So I took comfort in eating bad things (junk food) and smoking and I drank way too much alcohol - because I didn’t have doctors or treatments available to advise - apart from endless topical steroid creams and courses of oral steroids. My parents didn’t even take me to the GP often let alone a dermatologist!

Take care all keep posting - there are other younger people here so look out for them too! X

Ps my advice to you would be to research and become super well informed and try to use your very specialist knowledge to turn lemons into lemonade. It will take time and you should allow yourself plenty of emotional space to take it all in. But there’s so much that can be done through medications, diet and targeted exercise. Researching these will help you gain an understanding of what helps and what triggers your symptoms to worsen or improve.

[lacmorin in reply to Hidden]

I am a registred nurse and I have lupus and sjogrens and I could not have given better advice than this thank you (from Canada)

[Paul_Howard Partner LUPUS UK]

Hi Butterflyer ,

Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for information and support.

I'm glad that you've decided to post here and it is great that you are feeling good about it. I hope that the supportive responses from other members of the community will encourage you to continue to contribute and reach out.

If you live anywhere near London we have a support group who meet every two months which is specifically for young people (16-26) with lupus. You can find out more about this on our website at lupusuk.org.uk/lupus-in-you...