Given up on discussing my disability.

Jamie78
Jamie78 Community member Posts: 6 Listener
in Rare, invisible, and undiagnosed conditions

Hi all, I have been living with cervical myleopathy symptoms and cfs syndrome for 4 years. I am unable to work because I'm having to rest though out the day. Im in chronic pain, really dizzy, exhausted, weak and heavy limbs ect ect. When I'm feeling up to it I talk to neighbours, friends and I am OK for an hour or so. I have to constantly explain why I can't work and what I'm doing with my life. They always say I look OK and I would be better off working and maybe it's all in my head. I have given up trying to talk with them, and not being believed is starting to make me paranoid. Its a nightmare having to be in pain and not have a life, but the worst thing is people thinking I'm a lazy unemployed benifits cheat.

Comments

  • ricky1040
    ricky1040 Community member Posts: 168 Empowering

    Jamie. No matter what anyone thinks. You live in your body and you know how your feeling. So you know the answer. That's why this place is great it's full of people in similar positions. And for people who don't have similar positions I can understand that it's hard for them to understand.

  • ricky1040
    ricky1040 Community member Posts: 168 Empowering

    Iv been having similar issues. But I think my close loved ones now understand. But it took time to get to that place. Chronic pain is no joke.

  • Albus_Scope
    Albus_Scope Posts: 8,059 Online Community Team

    Hey @Jamie78 I'm so sorry to hear this. It can be so difficult having an invisible illness. People only ever see you when you're feeling up to seeing people, which I know first hand can be very rare.
    I expect they're trying to support you by saying you'll feel better if you get back into work, but I understand how hurtful it can be.

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