Question of the Week: Advocate Schmadvocate!

Amy Gurowitz Health Guide January 30, 2012
  • 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 our...

11 Comments
  • Cathy
    Health Guide
    Jan. 31, 2012

    Amy and fellow readers,

     

    When my son entered his senior year in high school, I decided I had to begin thinking about what I was going to do - and to be - when I started living in the empty nest of our home.  I had lived with my MS for 25 years and been active in the MS community, yet also had a fairly "normal" social and work life.  I had many...

    RHMLucky777

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    Amy and fellow readers,

     

    When my son entered his senior year in high school, I decided I had to begin thinking about what I was going to do - and to be - when I started living in the empty nest of our home.  I had lived with my MS for 25 years and been active in the MS community, yet also had a fairly "normal" social and work life.  I had many supportive people in my MS circle, and I thought I'd love to be able to "pay it forward" by helping others with MS with what I knew from my own experience.  So, I went to school to earn a certificate in Patient Advocacy, and in August 2011 I finished my program!  My ultimate goal is to work only with people with MS and autoimmune diseases.  But, alas, the job market and economy being as it is (and I am also on disabililty) part-time jobs are few and far between.  In the meantime, I love, love, love being a Health Patient Expert here on HealthCentral, being a Peer Resource for people taking Copaxone, and working with The National Multiple Sclerosis Society on various projects.  You know, I really didn't set out to write this response to be like a resume - truly.  What I wanted to say, for myself, for Amy, and for anyone else listening, that although I am almost 53 years old and desperately needing a way to find my own voice to feel I am a part of this world, I find sheer pleasure in helping others with MS.  Judy said it so well -speaking with truth and honesty about how MS, and how it has affected us - well - just reading about others' lives empowers us to go ahead and live our own MS life - out in the open, leaning on each other, laughing and crying together, and circling around each other.  That's true advocacy.

     

    P.S.  Judy - what is the name of your blog?:)

     

     

    • Amy Gurowitz
      Health Guide
      Feb. 02, 2012

      Thanks for your response Cathy. Even though I know these things about you, reading it now gives me a greater understanding of your path. We have so much in common: the length of our MS tenure, the long term copaxone use, our committment to giving it back to the community to name a few. Our common experiences that we are sharing with each other and the MS community...

      RHMLucky777

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      Thanks for your response Cathy. Even though I know these things about you, reading it now gives me a greater understanding of your path. We have so much in common: the length of our MS tenure, the long term copaxone use, our committment to giving it back to the community to name a few. Our common experiences that we are sharing with each other and the MS community here on HC's site and Facebook. You, like me, know what it was like to endure MS without Disease Modifying Drugs and with out the Internet and it's connection to the worldwide MS community. It's no wonder that living through that lonely time in MS history motivates us to do more to help people who are experiencing what we went through... now that we have access to do it! 

       

      Happy to be your partner in crime Cathy. I know we'll make big differences together!  :)

       

      BTW: My question related to self-advocasy- was that un clear? It seems like everyone is responding on a community level. Just curious! 

    • Cathy
      Health Guide
      Feb. 02, 2012

      It's clear now!!  You certainly opened up a wonderful conversation, and for that I am thankful.  Great to be your partner in crime, my friend!Cool

  • Vicki
    Health Guide
    Feb. 01, 2012

    From the comments, Garry and I see many contributions are being done by many advocates.

     

    Hiring a personal self-advocate is a great idea. It's especially significant when considering one's personal symptoms of MS as well as those of medications being taken.

     

    We checked a few sites for "How to Write a Great Want Ad." Interestingly, one good tip is...

    RHMLucky777

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    From the comments, Garry and I see many contributions are being done by many advocates.

     

    Hiring a personal self-advocate is a great idea. It's especially significant when considering one's personal symptoms of MS as well as those of medications being taken.

     

    We checked a few sites for "How to Write a Great Want Ad." Interestingly, one good tip is to keep the heading less than 5 words.

     

    Thanks, Amy, for the thought-provoking idea.

     

  • Judy
    Jan. 30, 2012

     

    I have had two “types” of MS: the overtly silent MS of long duration and the more recent manifestation with lasting ambulatory issues. In the earlier stage, I was capable physically of taking on an advocacy role, but I didn’t. I was essentially fleeing from the disease. Advocacy would have made it seem real. In the more recent stage,...

    RHMLucky777

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    I have had two “types” of MS: the overtly silent MS of long duration and the more recent manifestation with lasting ambulatory issues. In the earlier stage, I was capable physically of taking on an advocacy role, but I didn’t. I was essentially fleeing from the disease. Advocacy would have made it seem real. In the more recent stage, which has forced me to acknowledge that I have MS, I would have been open to advocacy, except that now my fatigue and neurological deficits became a real obstacle. I was barely able to take care of myself.

     

    Then I learned that advocacy can come in different types too. There is advocacy before public institutions. And there is advocacy which comes from inspiring others. In my case, I had started a blog about MS purely as an outlet for my emotions and thoughts about MS. It rather quickly moved into a poetry blog, still focused on MS. Then, to my surprise, followers started showing up and commenting. And they called me inspiring! No way. I thought. I often (though not solely ) wrote about some pretty dark stuff. How could I be inspiring?

     

    Then I wrote a poem about how I wished I could just write about uplifting positive topics. To my surprise, readers repeatedly commented they were inspired by my honesty about the illness. So I thought about that long and hard and opened myself up to a new meaning for the word, inspiring. I had always thought it referred to making someone feel enthusiastic and confident. Yet, in my honesty about MS, I seem to be expressing truths people welcome hearing and which help them. Now every day I publish a new poem with the knowledge that others affected by MS all around the world feel benefit. This kind of advocacy I can handle, given my current situation.

     

     

    • Amy Gurowitz
      Health Guide
      Jan. 31, 2012

      Hi Judy~ I can completely relate! I had never been a writer prior to starting my blog in 2007. While I was slow to start it went on to become my favorite coping mechanism. I'd write to get whatever feeling I was experiencing out on the table, I'd move those words around while editing, while moving in other ways eluded me. By the time I hit "publish" I revelled...

      RHMLucky777

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      Hi Judy~ I can completely relate! I had never been a writer prior to starting my blog in 2007. While I was slow to start it went on to become my favorite coping mechanism. I'd write to get whatever feeling I was experiencing out on the table, I'd move those words around while editing, while moving in other ways eluded me. By the time I hit "publish" I revelled in the accomplishment (being more than the sum of my MS parts) and found new joy as people commented and it became evident that I was preaching to a choir that could completely relate to my MS experience. And the super best part is when I make someone laugh beside myself. Though cracking-one-self-up is quite a gift. 

       

      While the question of the week was to point out how hard it is to self-advocate when you're "soaking in it", You've called to mind the many ways we give back to the MS community. Our writing is certainly included in that. 

       

      So, send me (and Cathy) your blog link. I'd love to read it. And check out mine at mslol.me I've written a few poems myself and would love to hear your take on them. Of course you can read my stuff posted here on Health Central. We writers need to spread the good word about living with it. Even the tough stuff. There are always people who will relate, be soothed and maybe even laugh~

      Thanks for your response Judy. I'll be looking for that link!

    • Judy
      Feb. 01, 2012

      Amy and Cathy,

       

      Here is the link to my blog which is called Peace Be With You on the MS Journey.

       

      http://lapazconvos.blogspot.com/

       

      I publish daily three-verse haiku poems, usually about some aspect of MS. Sometimes though I will do a traditional haiku poem about nature. Honesty about MS, both the good and the bad, is how others characterize...

      RHMLucky777

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      Amy and Cathy,

       

      Here is the link to my blog which is called Peace Be With You on the MS Journey.

       

      http://lapazconvos.blogspot.com/

       

      I publish daily three-verse haiku poems, usually about some aspect of MS. Sometimes though I will do a traditional haiku poem about nature. Honesty about MS, both the good and the bad, is how others characterize my poems.

       

      Amy, I already read your MSLOL and am grateful that you can find humor. It helps me find it too. When I have a chance, I will look for your poems. I'm sure they're great!

       

      Judy

       

       

       

  • hackwriter
    Jan. 30, 2012

    Amy! 

    Unlike you, I have little to do all day.  I don't work, I can't do much but sit at the computer.  I'm consumed by reading and posting on private MS FB groups and answering the questions of MS patients on WebMD (I seem to be the only patient expert there--and the only one who does internet research).  That's my contribution and it's...

    RHMLucky777

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    Amy! 

    Unlike you, I have little to do all day.  I don't work, I can't do much but sit at the computer.  I'm consumed by reading and posting on private MS FB groups and answering the questions of MS patients on WebMD (I seem to be the only patient expert there--and the only one who does internet research).  That's my contribution and it's all I can manage.

    After feeling much guilt about not doing more to advocate for MS, I decided that less disabled MS patients will have to do the more vigorous work of advocacy.  I will narrow my focus to what I still do effectively: write personally about MS and answer patient inquiries.  I believe that kind of input does reach many more people than we might realize.

    I'm a trained writer and have neglected my literary output.  This disease and its drug side effects completely dominate (and adversely affect) my thinking now and I'm none too irritated about that.

    It's a constant series of adjustments, isn't it?  Hope you can make peace with that fact, my dear friend.  And I hope you'll find what you're looking for.

    • Amy Gurowitz
      Health Guide
      Jan. 31, 2012

      Hey there, not-so-hack writer. I've read your stuff.. I know what you do.

       

      Just to be clear, I'm not talking about advocating for PWMS, I'm talking about self-advocating to create a more effective partnership with my doctor. 

       

      You are, not only doing a great deal for PWMS, you have recently served as my volunteer advocate as I'm trying to learn...

      RHMLucky777

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      Hey there, not-so-hack writer. I've read your stuff.. I know what you do.

       

      Just to be clear, I'm not talking about advocating for PWMS, I'm talking about self-advocating to create a more effective partnership with my doctor. 

       

      You are, not only doing a great deal for PWMS, you have recently served as my volunteer advocate as I'm trying to learn more about Baclofen and all its pitfalls.

       

      At the moment "off-label" side effects have me burning. We should call the FDA and the Pharma who makes it to get this on the label so no one else must endure what we have! We'd have our advocacy 101 requirements met by month 2 of 2012.

      Thanks friend!

      You do infact rock...

      Amy

  • Michaelbgerber
    Jan. 30, 2012

    Oy! I have such struggles. But my struggle is just the opposite of yours. My struggle is how do I stay active and involved with our community, up-to-date on all the research and discoveries, read all of my favorite publications and blogs having to do with MS and not have my life be completely consumed by this disease? I, like you, have more to do then just...

    RHMLucky777

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    Oy! I have such struggles. But my struggle is just the opposite of yours. My struggle is how do I stay active and involved with our community, up-to-date on all the research and discoveries, read all of my favorite publications and blogs having to do with MS and not have my life be completely consumed by this disease? I, like you, have more to do then just MS stuff. Having other stuff may be the cause of my occasional neglect and that is okay with me. It is okay with me for the same reason it should be okay with you. I do the best that I can.

     

     You want to know how you can do more. I want to know how I can do less and still be as informed and involved. I run a support group. We have one of the largest teams at one of the largest Walk MS events in the country, and we have several fundraising events that lead up to the Walk. (Does anyone in your area do "Drag Queen Bingo"?)  Then there are the doctors appointments (and not just neurologists), therapists, acupuncturists, and what ever else you would like to add to the list. Life can be full when it is all about MS. But I want my life to be more than that. I have a wife,  grown kids, friends, want to volunteer, write and do so much more then just the activities that revolve around those 2 little letters: MS!

     

    Hmmmm…….Maybe we are looking for the same thing.

     

     Michael

    • Amy Gurowitz
      Health Guide
      Jan. 31, 2012

      I was thinking that we want the same thing at first paragraph!:)

      It is nearing impossible to do it all. Which I why I'm hiring a volunteer health advocate the second one responds to my fictitious add! 

       

      We all have our own stories of important distractions and to-do-list items. I think that I speak for the majority here when I say that "Drag Queen...

      RHMLucky777

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      I was thinking that we want the same thing at first paragraph!:)

      It is nearing impossible to do it all. Which I why I'm hiring a volunteer health advocate the second one responds to my fictitious add! 

       

      We all have our own stories of important distractions and to-do-list items. I think that I speak for the majority here when I say that "Drag Queen Bingo" isn't on that list!

       

      Sounds awesome. We'll have to get one going on the East coast too!

      Thanks for your response Michael,

      Always happy to read your words!

      ~Amy G.