Written by on January 13th, 2016 – 3 Comments

By: Andrea, guest blogger

       the informal exchange of ideas by spoken words

Talk, discuss, rant, laugh, question, reflect, release, connect, bond, support. Imagine living for a year or a two without speaking to another human being. Imagine finding out the best news ever, and having no one to share that with. Now imagine finding out you have a life-changing condition, and never having the opportunity to share your thoughts, your fears, your hopes, your questions with a person who shares the same. Loneliness and isolation, waiting to be consoled by simple conversation. Talk, discuss, rant, laugh, question, reflect, release, connect, bond, support.

AdndreaDuring a conversation one night with a good friend, it suddenly dawned on me that I have never had a conversation with someone who has MS. How bizarre, really. I mean, I have endless conversations with neurologists and MS nurses, but never a conversation with a fellow MSer. Well, once I did have a brief conversation with an older woman with MS who lives in my community. However, that conversation was merely to discover “no, there are no MS support groups in our community at this time.” How is it possible that I, myself, have never noticed that I have not had a moment to talk with and listen to someone fighting the same kind of battle as I am? Not yet had a moment of connection?

I have so many questions and thoughts at this exact moment that are brewing inside of me. Some lean towards fear, some are just plain wonder. I couldn’t imagine having the opportunity to talk with someone who perhaps shares the same thoughts, or not.  Someone whose words have a little more authentic validity than the words of support I hear from the non-MSers who create my wonderful support network. For the record, all of who have a direct impact on the amazing and positive path I am taking with my MS, and none of whom I would ever give up. I hope you know who you are…

So, my question is, who do you talk to? And who wants to talk?

3 Responses

  1. F.U.MS says:

    Hey Andrea.

    Great post! It took me a long time before I had a conversation with another human that had MS. Now I can say, I’ve met dozens of amazing people who are going through the same battle I am. I have been talking to a psychiatrist for about 15 years now. On and off. He helps when I just need to get shit off my chest. I sometimes feel like I am burdening the ones I love with my fears, so I tell him. Talking is important. There are no real rules to it in our situation.
    Thanks for the post.

    • Andrea says:

      Hi Aaron! Thank you so much for your reply! Means a lot to hear from someone going though this, and to hear how you deal (or try to deal). In the end, I guess it really doesn’t matter who you talk to, just as long as you talk.
      I hope you’re finding your way thru this little bump in the road on this journey of yours. I’m rooting for you, we all are. May be hard to see it now, but one day you’ll look back on this moment in your life, and you’ll be damn proud of yourself for fighting your way thru it.
      Stay strong.

  2. Roz says:

    My daughter as been diagnosed as well………..she has a blog on here and she would be thrilled to chat with you about your experiences………