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ME/CFS Perception – The Crazy Stigma

1/21/2014

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 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 struggle but I hesitated. The stigma of ‘mental weakness’ or crazy has always been attached to ME/CFS and even when I was well again, I would see that association flash across a persons face whenever I told someone that I was once sick with ME/CFS.  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, 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, 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 frequently disappear from
view.

Are you getting the crazy stigma when you talk about ME/CFS?   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
1/25/2014 06:41:49 pm

Your blog is a part of my recovery, Martha. It helps to know someone who has gone through the real life trials and tribulations of such a challenging illness. In the beginning, I shared with a person or two who were not supportive and it had a big effect. I wanted and want to become well so I persisted and part of that search revealed a book on a young woman who recovered from rheutmatoid arthritis, and then the book I searched for was ‘there’. It was your book, a book which spoke about real symptoms and a plan for becoming better.

I admire that you continue to speak out, it makes a difference for me and many who have read your book and blog. Lately I have faced some very stressful business situations, ones I don’t honestly feel I could have dealt with a few years ago.

Now when I feel too tired to proceed, I rest, and I’ve been trying to remind myself of this mantra ‘my body, my health’ ... those are my main and over riding concern, and in the context of my life, they are The most important.

Reply
Martha
1/26/2014 12:25:41 am

Thank you Tim for your honest, heartfelt and helpful contributions to the conversation. We appreciate your voice and your willingness to speak out too. "My body, my health" is a great mantra for anyone struggling with ME/CFS. Thanks!

Reply
Sophie Rivett link
2/4/2014 04:53:12 am

Dear Martha, I've just discovered your blog and have read through some of your recent posts, which I've enjoyed. I'm glad you're fully recovered and I find that encouraging as I'm in the middle of an ME crash at present.
I've had ME on and off for several years but have only just started to tell colleagues. Being a doctor, I worried about the reaction from colleagues. I've come to realise that the only way I can manage the condition is to be honest with myself and others about how much work I am able to do without pushing myself into relapse or prolonging crashes. Up until now, I've just pushed myself until I get really unwell, cannot keep up with my work, colleagues start to notice, I end up having to call in sick frequently or quit the job altogether and colleagues think it's because I'm overstressed, burnt out or just not cut out for the job. I'm hoping that by being more open about having ME and by taking on less work, I can avoid this situation in future.
There is a lack of understanding when telling people you have ME but I get amused rather than angry when people say things like, "Maybe you just need a holiday" or "Have you thought about CBT/a stress management course?" or "This will cheer you up...". It's a difficult condition for anyone who doesn't have it to understand. I agree there is a stigma and ME sufferers resent being thought of as having a psychiatric disorder when ME is, in fact, physical. However, I feel uneasy that this resentment implies that those who do suffer from depression do not have a "proper illness" whereas those with ME do. I agree with you that the more ME/CFS is discussed, the more it will be understood and so hopefully there will be less stigma. However, this is also really important in mental illness, which can be as disabling as physical illness. The only advantage I can say there is to having depression rather than ME/CFS is that it does not last as long and it can respond to medication!

Reply
Martha
2/9/2014 12:50:05 am

I completely understand you're decision to not tell your colleagues about your ME and the pattern you developed to just push/crash. I think everyone who has ever struggled with ME/CFS has spent time in that same place. Good for you that you're talking about it now. The stigma about ME/CFS being 'in your head' is frustrating and I'm glad that you've developed a sense of humor about it. And I agree that mental illness is no less real than physical illness and it is not my intention to imply that. I think that when we label ME/CFS as a mental illness, it hinders the research that is needed to get to the actual disease/s behind the symptoms. There's something physically wrong with ME/CFS patients and we deserve solid research to find some answers. Thanks Sophie for your astute comments. We hope to hear more.

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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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