alone

[Badyear]

hi my name is Shawn and I’ve been through hell and back multiple times in my one year of lupus. Just looking to talk to other lupus survivors because I have never met anyone with this disease. Help would be appreciated.

[Chris21]

Hi Shawn, many of us on the forum will understand what you've been through, it can be a long rough journey to get a diagnosis and once you know what you're dealing with, the journey continues.

Ask any questions you like, even if you think they sound daft, you'll be surprised at the response you get. Theres also a lot of publication booklets on the lupus uk website, which are very helpful.

i had lupus sle and sjogrens as first diagnosis, now theres several that have joined in along the way. Im always looking at ways to stay well and independant as possible. The lovely people on this forum have helped tremendously. 🙂

[Tinkabell555]

sorry to hear this Shawn, lupus can be brutal at times but I also think it can help shift your perspective to see what we can do, what we’re still capable of, that we may have taken for granted before! I remeber the first time I had covid I was terrified wondered if I’d ever be able to breathe normally again, the first walk after I recovered felt so good! I’ve been diagnosed with SLE almost 5 years now n it’s still hard at times but I’ve learned to adjust and I hope u will too! There are often local support groups that meet face to face that can be invaluable to connect with those that really understand what you’re going through. You aren’t alone and glad u reached out!

[CecilyParsley]

Hi Shawn, I am so sorry that you have had such a tough time. You are in the right place here. This is a welcoming supportive and informative place to share stories, get advice and even have a giggle along the way. I think the worst thing about any chronic health issue is that you feel isolated and alone. Even friends and family often fail to understand the pain and suffering and sheer relentlessness of it.

I am sure you will get the support you need here. Welcome 🙂

[RosieA]

Welcome Shawn. I see you are from Canada. I think there are others on the forum who are from your part of the world. It has taken 5 years for my disease to evolve to SLE. During that time I have had a couple of different diagnosis but they have always been autoimmune so I have had various meds to help. Having said that I have had periods ( sometimes for months on end) of unrelenting pain, fatigue etc etc, until finally it came to a head when pericarditis/pleurisy was finally diagnosed. I am now on Azathioprine and starting, just starting to turn a corner. So there is light. This forum is a life line. People have always been supportive, informative and non judgemental. I have learned so much and quite frankly it has kept me sane during the worst parts. It also gives me some pleasure in knowing that however rough I feel I might be able to offer support to others who post.

[MusicalFurbaby]

Welcome to you Shawn. You are in good company here. There are lots of ‘lupies’ on this forum and you will find most times that one of your fellow lupies is experiencing exactly the same thing as you. Feel free to post anytime.

I was diagnosed with lupus about 10 years ago but I reckon I’ve had it for nearly 20 years, based on symptomology. As much as lupus is a pain in the proverbial, it’s good to have a diagnosis for the madness that’s going on in your body. Not having a name for it can be just as bad, if not worse!

Hope you are taking care of yourself at present. You’ve come to the right place. 🌻🌈