Just want to talk about life with lupus

Im 18, college student, diagnosed less than a year ago. Feeling lost, confused and alone. Anyone want to talk about their experience?

Hi Isabel, please us know if someone reached out to you?

Hello, I was also 18 when I was diagnosed and I was away at college. I'm 30 now but know exactly how you are feeling! Feel free to message me!

Having to cope with Lupus just as you are beginning your adult life must be especially difficult. On the plus side, at least you know what you are facing, and can receive treatment. I believe I had SLE for years without diagnosis or medication.
I assumed I just had arthritis. Good luck on your journey, and know you are not alone.

I'm 57 DX 3 years, so in a very different stage of life than you. I did 'lose' a career I treasured & had worked very hard for. So I do know what its like to feel lost confused & alone. I believe if you are able to access information on line & be discriminating about what you take on board you will do well. I extend my very best wishes to you & hope you find good reliable & communicative Doctors & Pharmacists. If you are still active devote yourself to staying that way as long as possible. Don't despair if you are in a total mess as you will find remission & hopefully you will be someone who stays in remission for a long time. Happy New Year to you Isabel. Kaz xx

Hi Isabel! Like you my Lupus started when I was 18 and in college. I am 32 now but I can definitely relate to how you are feeling lost, confused and alone. I would be happy to share my experience with you and answer any questions you have. I know it is very hard to deal with health problems when you are supposed to be enjoying this new chapter of your life. Please feel free to ask me any questions you have about anything. I am also happy to share any part of my experience with Lupus with you. Message me anytime!

Hi Isabel, I am 37, diagnosed at 32, it wasn’t my age that was scary, but the prognosis at any age is scary. Don’t live life as a lupus patient, just live life! Be aware of your illness limitations and create a new existence. Look forward to being happy, having kids (if you want) and just being happy. You have a lot of living ahead of you.

It sucks doesn’t it Isabel. Yes, let’s talk. I’ll start by listening to what on your mind.

Diagnosed with r.a at 4 than sle at 14 its such a f* struggle. But god gets me through my problem is what others opinions are about thr disease because they say u dont look sick but its because im so good at toughing it out. I could never go back to eating normal food i eat palei diet. I excersise everyday and sleep ten hrs( try too) i was on 1000 mg of predisone when i got diagosed 2000 mg cellcept and methotrexate. Now i take curcumin like its going out of style work part time and rest at 4 every day. For like 2 hours ull get through this just pray its a journey your not alone

Started showing symptoms at seventeen it was easier back then because I had my mom. Now that she is gone it is harder to take care of myself and reach out to others

Isabel, you are feeling what many of us feel. Everday is different and on the bad ones, you just have to ride out the wave…it will pass. Best thing to do is what you did here…post something.