...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
  • Home
  • About
    • This Site
    • Martha
  • Participate
  • Contact
    • Contact Form
    • Submissions
  • Links
  • Book
  • Further Lessons
  • Thanks

ME/CFS Judgments - Dealing with the Stigma

11/5/2013

2 Comments

 
Picture© 2013 TSM
Three weeks ago I had a Basal cell carcinoma removed from my left leg just above the knee.  They took a considerable chunk of flesh which was necessary to get all of it.  My postop instructions included “don’t bend your knee” for two weeks or you’ll risk infection and tearing out the stitches.  Basically they said “sit with your leg up”.  The first few days were relaxing and I got pampered.  But by the fourth day I was sick of being sick.  And of course this reminded me of my struggle with ME/CFS and the endless, often dark tunnel of rest and restricted activities that took away four years of my life.  My present situation was easy by comparison.

So I adhered to instructions and did my best not to bend my knee.  This required keeping my leg stiff as I walked and navigated stairs.  And I figured out how to drive with my left leg straight out jammed up under the dashboard.  As I limped about doing my errands I quickly realized that people were staring at me.  And not the casual glance that strangers exchange when they pass each other in a public place.  These were long, hard, head turning stares.  Since I wasn’t on crutches and my large bandage wasn’t visible, I was an oddity of some kind – permanently damaged and handicapped.  I felt the same judgment that I had suffered when I was struggling with ME/CFS.  Many people labeled me as weak and inferior – depressed, lazy and a hypochondriac. This stigma was almost universal because most of the medical world had determined that I didn’t have a real physical illness.  And even after I was fully recovered, the stigma remained as people assumed that I was weak and could mentally implode again at any moment.

This recent experience has been a sharp reminder of the mental fortitude required to deal with the many cruelties of ME/CFS. 
How do you fend off the judgments of others?  What are your strategies?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

2 Comments
Tim Boland
11/6/2013 01:12:40 pm

You have so much fortitude and courage, Martha. It’s good that you had this procedure and that you are gentle and careful in your recovery.

Thankfully my doctor here, though a bit of a know it all (not much of a listener), did not have any difficulty with my diagnosis of CFS, though as we’ve discussed, it is the final option after running lots of tests.

I read once that just as you say with your healing leg, CFS too isn’t always obvious to others from the outside. My worst experiences have been from those who must tell a story that of something they feel has it much worse - the old ‘my story is more dramatic than yours!’ - often the most depressing story they can think of! And those who say things which tend to make me feel worse, as if there isn’t a possibility of recovery. I am doing so much more, and at times even happily, than three years ago. And my doctor has helped with this too, as he had a patient who fully recovered from CFS, as he said ‘it was nothing we did’ meaning that his body over time healed and he recovered. I too have had this experience and if I had followed my own strong intuitive feelings about what ‘not’ to do .. Well, I will just say that I am feeling better and stronger as times goes along. And your advice is invaluable because doing proper self care and being aware, with discipline, does make a world of difference.

Reply
Martha
11/7/2013 09:24:49 am

We are all too familiar with the experience of our struggle with ME/CFS being treated as a competition to tell the worst illness story. Ugh! It's great that you are feeling stronger and healthier. Thanks Tim!

Reply

Your comment will be posted after it is approved.


Leave a Reply.

    Picture
    Hello,  I'm
    Martha Kilcoyne

    Welcome
     to our Community!

    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

      Join Our Community
      Enter your email address to
      follow this blog.

    Join

    For Books, Supplements, Sleep aids and more

    Picture

    Archives

    June 2022
    May 2022
    April 2022
    March 2022
    February 2022
    January 2022
    December 2021
    November 2021
    September 2021
    August 2021
    July 2021
    June 2021
    May 2021
    April 2021
    March 2021
    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013
    December 2012
    November 2012
    October 2012
    September 2012
    August 2012
    July 2012
    June 2012
    May 2012
    April 2012
    March 2012
    February 2012
    January 2012
    December 2011
    November 2011
    October 2011
    September 2011
    August 2011
    July 2011

    Categories

    All
    Appreciation
    Attitude
    Being Positive
    Brain Fog
    Choices
    Community
    Connect
    Coping
    Data
    Diagnosis
    Doctor
    Emotions
    Energy
    First
    Food
    Funding
    Genetics
    Goals
    Gratitude
    Groups
    Guest Blog
    Gut Feelings
    Health
    Helping
    Holidays
    Hope
    Humor
    Immune Support
    Inner Voice
    Ion Channelopathy
    Irony
    Isolation
    Journal
    Log
    Mantra
    Memory
    Mind
    Negativity
    Nutrition
    Opinions
    Organizations
    Outlook
    Pace
    Participate
    Patience
    Patterns
    Personality
    Perspective
    Protocol
    Provider
    Pushing Too Hard
    Pushing Too Hard
    Record
    Recovery
    Relapses
    Research
    Resolutions
    Rest
    Sleep Depravation
    Step By Step
    Step By Step
    Strategies
    Supplements
    Support
    Take Control
    Take Control
    Thankfulness
    Vacation
    Variables
    Version

    RSS Feed

    Picture
    Copyright © 2011-2012
    Triple Spiral MEDIA LLC