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My story

Discussion in 'Relationships & Lupus' started by pudding, Feb 24, 2016.

  1. pudding

    pudding New Member

    Hi everyone,

    I have just found this site today and I'm so glad because I have found people who may understand me. I'm not sure if this forum is still active but I'd really like to share my story and my feelings, so please sit back and read on.

    I was first diagnosed with lupus when I was 6 years old. After that I was never able fit in with my peers again. I am now 15 years old and struggling to cope with how 'different' I am compared to the majority. I have a hard time talking about my lupus but on the rare occasions that I do, people dismiss me as being annoying or complaining about a little thing. They cannot see how painful it can get sometimes, especially the emotional toll it takes. What hurts me most is the fact that my family does not understand me. I feel like I'm exaggerating whenever I talk about my symptoms and I hate it so much because I look and talk like a normal school kid but I can't run around like them. I really want to talk to someone who understands, I feel like such an outcast in my society.

    - Pudding
  2. x_claire_x

    x_claire_x Moderator

    Hi Pudding.. I am so sorry for what brings you here, but I am glad you have found us. The best people to talk to are those that are treading a similar path as you. I am wondering why your family do not believe you ? Surely they were there when you got diagnosed and have educated themselves on Lupus ?

    A lot of people use the spoon theory on to try and explain to family and friends how you have to ration and conserve energy (or spoons). Take a look at this theory in the first instance and see if this may help.

    Are you still under the care of a Rheumatologist ? If so do you go with your family to see them ?

    There are loads of people on here that are Kind, Informative, Witty, Helpful and you have come to a fab place......speak soon...........Claire
  3. debatat

    debatat Moderator

    I am so sorry to read your story but like Claire am glad that you have found us. We a great group of members who understand, and are compassionate and helpful and not too serious!

    I hope you have a good rheumy and your meds are helping.

    Take care.
  4. pudding

    pudding New Member

    Thank you x_claire_x and debatat for your replies.
    Yes, they are well aware that I'm diagnosed and visit a rheumy often. Thank you for mentioning the spoon theory, I think it's a great way to explain my symptoms and feelings. Perhaps I'm not very good at communicating, haha. Once again, thank you for your replies.
  5. x_claire_x

    x_claire_x Moderator

    Hi they sit in on the consultations ?

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