Hi, my name is Mother_of_Cats! Invisible disability

Mother_of_Cats
Mother_of_Cats Community Member Posts: 1 Listener

Hello everyone,

i am someone who is struggling with autoimmune illness (sytemic sclerosis), also diagnosed with fibromyalgia. There are days i almost feel normal again, then i tend to overdo, and there are most days when i struggle with pain, stiffness in my joints, brain fog and exhaustion. When i was diagnosed doctors said i had a rare condition, what they failed to mention is that it is also an invisible disability. One where people say things like: “but you look good”…. That doesn’t serve me much….

If you read to this point thank you, not many people are willing to read or hear me talk about my struggles, some friends have lost me because of that, I don’t mind people not wanting to hear it as long as they are straightforward, but start humming when i speak….

Hope you are all having a nice evening!

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Comments

  • Bluebell21
    Bluebell21 Community Member Posts: 2,593 Trailblazing

    Hello @Mother_of_Cats welcome to the Community. I hope you enjoy your time on the forum. Any questions just ask.

    Thank you for telling us something about yourself.

    It is good that people still think you look good but this does not take into account the days where you do not. They probably do not see you on those days.

    Friends should want to hear how you are doing and your struggles and be a bit more understanding of what you have to deal with.

    To start humming when you start to speak is very rude and not acceptable.

    Have a look around and join in when you are ready.

    Take care.

  • luvpink
    luvpink Community Member Posts: 4,403 Championing

    @Mother_of_Cats

    Hi and a very warm welcome to the community.

    I too have an invisible illness and diagnosed with fibromylagia 16 years ago.

    I live with pain, brain fog, stiffness in my joints and exhaustion.

    I was also diagnosed with chronic fatigue syndrome 16 years ago and it gradually worsened over the years.

    I get the "you look really well' comments from people who obviously have no idea that couldn't be further from the truth.

    Anyway enough about me.

    Welcome and take care.

  • Rachel_Scope
    Rachel_Scope Posts: 3,450 Online Community Team

    Welcome to the community @Mother_of_Cats! I'm so sorry that your friends haven't been supportive. I have chronic pain and to most people I look 'normal' but in reality I'm constantly in pain. I feel like I have to explain myself when I need to ask to sit down when I'm out. There will be many people here who can relate to your situation and hopefully it'll provide some support and an outlet for you.

    Great username by the way. I'm hoping that you do have cats because we'd love to see them! We have Pets Corner where everyone shows off their furry friends 😊