I feel so alone after being diagnosed, sure I hate being around people right now but there has to be a way for other’s to understand that we aren’t ourselves right now. And what can we do about it? Sometimes I just want it to END!

Joint pain

Fibromyalgia (FM)

Systemic Lupus Erythematosus (SLE)

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  • Danielleml


    Yeah it sucks, I know the feeling and fibromyalgia and lupus are things people don't understand if you don't look sick. Things will get better. I was diagnosed in December of 2013 and I have my good and bad days.

    • Cubantia


      I am so tired of waiting. I wanted a slow pasted life so I move from NJ to FL and all of this has come out down here. Not sure if I should move back up north, maybe it will help my health!? Idk anymore so lost, mental health is slowly Deteriorating

  • Cubantia



  • TrixNY


    Yes I can understand all of these feelings. I have also been annoyed by ‘healthy’ friends who didn’t understand why I was being so cautious about Covid. I already have a chronic illness- I don’t need another one! They don’t understand why I make plans and then need to cancel them because of a flare. When I meet people who also have SLE, it definitely helps with understanding each other, but if we’re not feeling good at different times it can be weeks between seeing each other. I get depressed thinking about how active I used to be… before constant joint pain, inflammation, GI issues, etc.

  • Yuli


    Don’t give up… sometimes circumstances are hard!! But God is bigger than anything!! I understand your thoughts and feeling. I was diagnosed three years ago and I was driving myself crazy!! It takes time and patience. You’re brave!! You can do it!!

  • warriormotheroftwins


    I was diagnosed with lupus SLE 2 years ago. I also have Fibromyalgia. People don't understand the every day struggle. I also have endometriosis since I'm a teenager. It's hard to be around people when you aren't feeling well let alone feeling like yourself. Just keep being positive and pray on it! One day at time is all we can do, right... good luck to you!

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