Question of the Week: Advocate Schmadvocate!

  • I've always said that it is a cruel joke to expect a person living with MS - the chronic incurable disease that changes over years, months, heck - even days - to be his/her own advocate. I mean c'mon! How are we supposed to by-pass the emotions that are in-and-of-themselves paralyzing, to educate ourselves about our version of this disease that is always changing?


    I'm just trying to figure out how to do what I need to do while I'm trying to cope with staggering pain, an inability to walk, to stand, or hold my bladder. To find a way to move without being dizzy to a point of nausea, and whatever my symptom de jour is (appears unannounced).  Meanwhile I am busy being a mom, a wife, the president (of MS SoftServe Wink), a writer, a panelist, a person representing those of us who are living with it to anyone who needs to know. And the many things that bring meaning to my life while I cope.

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    But Amy, "Being your own advocate ensures the best partnership with your doctor and allows for the best treatment of your disease." Okay, I get that. I just wish I could find an opening on my otherwise closed to-do-list.


    So here's what I'm thinking:


    Wanted: Volunteer Health Advocate to be all that and more.


    I'm submitting it to the classifieds tomorrow. Unless of course you know someone, who know someone, who...


    Once you've gone down your list of contacts, tell me how you manage to advocate for your version of MS. Really. Tell me! I have my keyboard out and I'm open to suggestions!


Published On: January 30, 2012