...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS/SEID Perception – The Crazy Stigma

3/7/2017

4 Comments

 
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Over the weekend I was talking with someone about how people change when they go through personal struggles that challenge them to their core.  By comparison, other difficulties in everyday life are less stressful and seem easier to handle.  And of course I began to think about my ME/CFS/SEID days and how much I have changed – maybe even gained – in my more robust ability to weather the tribulations of a healthy life.
 
This person didn’t know me when I was sick and I was about to mention my ME/CFS/SEID struggle but I hesitated.  The stigma of ‘mental weakness’ or crazy has always been attached to ME/CFS/SEID.  Whenever I had told someone that I was once sick with ME/CFS/SEID, I would see that association flash across a persons face.  Suddenly, even though they had only seen me healthy, I was dropped down a few notches in their estimation.  I became less then whole.  Damaged with the potential to be weak or needy.  Maybe even a burden.  So I hesitated.
 
Then I thickened my skin and plunged forward, knowing that the more we talk about ME/CFS/SEID, and the more we engage with the main stream, the better the odds of getting to the answers for this cruel disease.  And as I voiced that I had once been bedridden with ME/CFS/SEID, the response was OK.  Better than I expected but it was still tinged with a bit of stigma.  And it renewed my determination to be part of the conversation because so many of those who are struggling with ME/CFS/SEID frequently disappear from view.

 
Are you getting the crazy stigma when you talk about ME/CFS/SEID?   How are you dealing with it?  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


4 Comments
Tim Boland
3/9/2017 05:51:45 pm

Hello Martha and all, I hope to be back soon to respond to this week's blog, as you had put up the name of SEID, I found this informative article, also as you spoke about, the needed lack of attention to this illness.

http://www.sciencemag.org/news/2015/02/goodbye-chronic-fatigue-syndrome-hello-seid

Reply
Martha
3/10/2017 03:27:47 pm

Thanks Tim!

Reply
Tim Boland
3/13/2017 06:10:41 pm

It is your voice and others on this blog that have helped me very much, Martha. To know that I am not alone, and that as you speak about in this blog, others who have not had this illness seem, often, to have a hard time comprehending what it is, and how it affects us.

Reply
Martha
3/13/2017 10:24:12 pm

Your heartfelt voice on this blog is much appreciated too. Thanks Tim!

Reply

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    Hello,  I'm
    Martha Kilcoyne

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    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.

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