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ME/CFS Perspective – Your Consent

4/29/2014

7 Comments

 
PictureEleanor Roosevelt
I’ve been lucky to have many teachers and mentors in my life.  They’ve come from traditional as well as nontraditional directions.  One of my favorites is Eleanor Roosevelt. Recently, I overheard a parent dumping a load of verbal judgment on his child and I started thinking about her famous quote, “No one can make you feel inferior without your consent.”  And I was remembering how hard it was when I was struggling with ME/CFS, to ignore the judgmental comments I received about my ‘weakness’.  That somehow I was at fault for being sick - that I was choosing to be sick.  And that the reason for my continued illness was a lack of will or just plain laziness.  I remembered how much that hurt being flung at a ‘work till you drop’ Type A personality like me.

When I finally understood that the path back to health needed to be a case study of one, that freed me from the burden of the ‘holier than thou’ judgments.  But it took conscious effort to ignore – to not give my consent for others to label me as
inferior.

Another quote of Eleanor’s helped me through that time as well.  “Do one thing everyday that scares you.”  It took a great deal of courage to let go of so much in order to focus on getting well again.


How do you deal with the attitude of those who look at you and see weakness?  Or even laziness?  What are your strategies
for withholding your consent?  Please COMMENT or Send in your thoughts and I’ll post them.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.

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

Be Well Again,

Martha

7 Comments
Tim Boland
5/1/2014 06:10:45 pm

I was sorry to read about the poor child whose parent was heaping verbal judgments on him or her, as children, we trust others to kindly lead the way. When a parent does not see us for who we are, or treats us in a way demeaning or a way judgmentally, those judgments can echo in our minds and our lives for many years.

As adults, we do have a choice to behave more as Eleanor Roosevelt did, and to try to not allow the comments of others to sting and to hurt. I found out early on with my CFS that there were people who seemed to have an unerring ability to say things which tended to take away hope, or to assume they knew how I felt when really they had no idea. Some people in life are toxic, and as part of our self care, we can learn to avoid such people. People who diminish us are not people we need to heal, for those either with an illness of those who are well.

I believe deeply in self love, not a self centered, selfish love, but a love of our own unique selves, our abilities and characters. Jesus was said to have said ‘love your neighbor as yourself’, and the golden rule which is found in many world philosophies ‘do unto others as you would have them do to you’, which for healthy people, means wishing others to show us respect and appreciation. Those who cannot and will not can work against our recovery.

Reply
Martha
5/7/2014 07:35:48 am

"The Four Agreements" by Don Miguel Ruiz is on my top ten list of favorite books. The second agreement is precisely about deflecting the negative words and judgments of others - having a protective "thick skin". I found this perspective to be invaluable during my struggle with ME/CFS. And thanks for the spiritual references. It is what we would all like to be. Amen, Tim!

Reply
Donna
5/2/2014 12:19:55 am

Boom, Martha! You hit close to home with this one! It has been a long journey of accepting my illness and valuing myself in spite of it. (I'm probably not quite there yet.) Like so many others, in the beginning years I was diagnosed with depression. People, including those closest to me, seemed to regard my problems as "an illness of convenience." As though, I had chosen this path to avoid unpleasant tasks. That was very hurtful; I had always been willing to dig in and get my hands dirty. Of course, then it progressed to, "If you would just try harder, Donna, maybe exercise more?" I bought into it and blamed myself for many years. Being sick became my dirty little secret to avoid the hurtful, judgmental comments from others. I rode the roller coaster of feeling a bit better, overdoing and crashing. Later, came the realization, "How can I expect anyone to understand? They have no point of reference." It became easier to forgive people, but still not myself. There was also the hurdle that "good things happen for good people." Well, then, consequently, bad things must happen to bad people, right? What had I done to deserve this? After releasing that fallacy, I held onto, "It's random; it's not punishment." Not too long ago during a conversation, one of my mentors said offhandedly, "This happened to you." Wow! Fireworks! That simple statement helped release what remained of my self-blame. I'm finding that only those who live or have lived with chronic illness can possibly understand the daily physical, mental and emotional toll that it can cause for someone. The others...I hope that they never have to learn it. I have been very weak recently unable to leave my home. Over the last six months or so half of my hair has fallen out, and looking ragged wasn't helping my positivity. I made an appointment for a haircut determined to get there at whatever cost. My daughter came up from Manhattan to go along and help in whatever way she could. Upon arriving at the building that housed the hair salon, we learned that the elevator was out of service. The salon is on the third floor. It looked hopeless. As solutions were being examined, a receptionist from the salon and my stylist kept repeating, "Are you sure that you can't climb the stairs?" Without feeling inferior I was able to reply, "No way!" Big progress for me. (There was a happy ending as I rode the elevator and got the haircut!) I suppose that the hurt will continue to some degree. Most of the comments are from well-intentioned people who simply can't understand, but it's getting better and easier.

Reply
Tim Boland
5/7/2014 07:43:06 am

Thank you Donna for sharing the hardships you have had, I have often thought that I would not wish this illness on anyone, not a worst enemy, no one. No one deserves to suffer and we certainly did not want this to happen to us.

I have had the same thoughts, that unless a person has or has had a serious illness, they simply cannot understand fully what it means to feel this way.

Your words ring true, it is hard to deflect those kinds of comments, especially I think since we are often in a weakened and more vulnerable position. Wishing you all the best and hoping this week brings some things which will bring a smile. Tim

Reply
Martha
5/7/2014 07:52:37 am

Donna, It's good that you have decided to stop the self blame. This disease is SO cruel. It's a heavy load to dump on ourselves in addition to all the negativity that we get from others. I'm glad that you knew your capacity and didn't push yourself into another crash trying to climb the stairs to the salon. I don't know your medical history but the fact that your hair is falling out surprised me. It is not a symptom of ME/CFS that people usually report. The diagnosis of ME/CFS is one of exclusion - they don't know what you actually have. And many people have combinations of ME/CFS and other identified complications. I would encourage you to find out specifically why you're losing hair if you don't already know. It may contain important clues to help you understand your version of this cruel disease called ME/CFS. Be in touch. Thanks, Martha

Reply
Evelyn Cale link
5/4/2014 09:04:53 am

Amazing post you have here. Thank you and be well as well

Reply
Martha
5/7/2014 07:55:50 am

Thanks Evelyn! As a former ME/CFS patient, I am committed to being part of the conversation. Good to hear your voice.

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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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