Hi, my name is lisajmcgee!

lisajmcgee
lisajmcgee Online Community Member Posts: 1 Listener
in Cerebral Palsy Network
Hi all. I have fibromyalgia and all the lovely things that go with it. I don't like using the word fibromyalgia because it's still not a real condition to a lot of people. Being embarrassed by my disability does make life tough sometimes. I rather tell people I have cfs, ibs, rls, arthritis, restless bladder, anxiety, depression, memory problems......and more. Tell people that and they understand. Tell people I have fibro and they don't get it. I hate when my husband says he is my carer. I am embarrassed by that. I feel that I should work like I did until 3 years ago. I feel that there are a lot of people that have far worse disabilities than me and that I shouldn't be part of the benefits system as some people deserve it a whole lot more than me. I still give up my seat for others whether i am in pain or not. 
I've never told anyone I feel like this. And I'm smiling as I'm writing this because it feels good to tell someone who might understand how I feel. 
Thank you for reading.
Gentle hugs to you all 

Comments

  • AnkyieSpon
    AnkyieSpon Online Community Member Posts: 138 Empowering
    @lisajmcgee hello & welcome to the community, we are all here to listen and support.
    You're not alone by the way. I totally understand how you feel. I didn't tell everyone about my Ankylosing Spondylitis diagnosis for years because I didn't want the questions, the know it all comments because they have a bad back too blah blah blah. I was diagnosed with Fibromyalgia a year ago & early Osteoarthritis too. I also feel guilty when people see my tfl badge asking for a seat. I get paranoid using disabled toilet or using my disabled badge but you know what? We are still the person we have always been & have the same rights as the next person. For me to accept my diagnosis I had to see it as an opertunity to raise awareness and help others, this also gives you the opportunity to educate people who claim to know it all ?  
    Another release i found was writing a blog. I do it when I can, I'm not doing it for followers but as a release. 
    You are you you are not your disability. 
    Please tell me if I can help in anyway, even if it's to have a rant. 
  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,764 Pioneering
    Hi @lisajmcgee,

    Welcome to the community and thank you for sharing your story with us. 
    I am happy to hear you feel good, opening up on here. Feel free to come back and tell us more, if you want. :) 

    Please have a look at our quick guide about our community and feel free to join any of our recent discussions  and chat with our chronic pain advisor. .
  • thespiceman
    thespiceman Online Community Member Posts: 6,283 Championing
    Hello @lisajmcgee Pleased to meet you . Welcome.

    Thank you for joining and sharing.  You come to the right place for support. Plus information, advice and most of important of all new friends.

    We are a friendly community. Care and share.

    Please ask if we can advise on anything. Some one will know from our team or community members.

    You are never alone. Always some one to talk to and chat.  All helps.

    Please take care.

    @thespiceman
  • Ami2301
    Ami2301 Online Community Member Posts: 7,877 Championing
    Hi @lisajmcgee welcome to the community! :)

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