8 Responses

  1. Vickie
    | Reply

    It is so very hard to find the right person to talk about your “it” with. I already feel like such a drain on my family, and I kind of sugar coat things with my friends. It is so nice to read your blog because I know “you get it” because you have lived it!

    • Jane Waterman
      | Reply

      Hi Vickie,

      I hear you. I spent too many years sharing with the wrong kinds of people and feeling worse as a result. By the time I found some genuinely compassionate and skilled counsellors, a lot of damage had been done. I find I no longer have the stomach to sugar coat things… I’d rather not talk about it then, I guess! It just feels false, so if people ask how I am and it’s not good, I’ll just say, “I’m okay,” and leave it at that.

      Like you, I’m really glad to have a community of amazing people to connect with online, as you know you don’t have to hide even the crappiest days – they really do “get it”!

      Take care,
      Jane

  2. Julie
    | Reply

    Thank you so much Jane for giving a voice for those who are unable. You a beautiful blessing in my life!

    • Jane Waterman
      | Reply

      Thank you, Sweetheart! As I feel blessed to have you! Hope to see you soon. Lots of love and big hugs! xxxx

  3. Victoria
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    Stumbled across your blog when I Googled “seronegative Sjogren’s”. I am so sorry you’re going though this with doctors, and you are right about the “it’s age” comment regarding dry eyes/mouth – I was told that last month from a rheumatologist who actually became angry that my pcp had sent me to her, when all my tests (ANA and everything else except ESR) were negative. I am 58. Almost all my symptoms she dismissed as aging. Then she told me to go back to my pcp and get tested for cancer. So I can empathize with you. I hope you can find what you need medically before you get to my age. I am pretty sure, in my case, my illness will never be diagnosed.

    • Jane Waterman
      | Reply

      Hi Victoria,

      Thank you for writing and sharing your experiences with me. A lot of rheumatologists seem to have that prejudice, which seems crazy, when the Sjogren’s Syndrome Foundation says 70% are positive for SS-A and 40% for SS-B. That’s a lot of seronegative people! Ultimately, having a rheumatologist “believe me” after my first one retired has become less important. I can’t tolerate the current treatments, and so it seems better to just work at the things I can do: yoga, eating better, being in nature. The biggest one has been learning to be more compassionate to myself. This has surprisingly been the hardest thing for me, so I work at it as often as I can.

      Ultimately, you know your body best, so I think it’s important to learn everything you can, and explore whatever options you can, even if just with your PCP. And hopefully, they can get you another referral to someone who thinks a little outside the box.

      I’ve become used to being dismissed by doctors – the biggest thing is not to dismiss my own suffering.

      Blessings,
      Jane

  4. Therese Kay
    | Reply

    This is so beautifully expressed and so needed. It is OK to talk about “it”. So many people hide out of shame or fear. Thank you for your voice and your courage. I’ve shared one of your posts and plan to share this one as well. I hope you are able to keep up with your blog despite yoir challenges. Your voice is needed!

    • Jane Waterman
      | Reply

      Hi Therese,

      Thanks so much for taking the time to write to me – it always means so much to hear that my writing has had an impact. Thanks also for the encouragement to keep writing! Although chronic fatigue is a constant challenge, I keep working on trying to find the right balance to live, write and create. I’m hoping to do more of the latter two soon!

      Many blessings,
      Jane

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