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ME/CFS Support – Talk About What has Happened to You

7/15/2014

I often hear from people struggling with ME/CFS who feel alone and isolated. Their efforts to stay connected are stifled by their limited energy and their inability to explain ME/CFS. We’ve all been there. And for many of us, despite the fact that we deal with ME/CFS every day, we don’t really understand it.

When I was sick, I didn’t know how to tell people what had happened to me. The official definition of ME/CFS didn’t help. It’s a group of vague symptoms that occur for 6 months or more. It’s not even a disease – it’s a syndrome.
And when I was able to be up and around, I didn’t look sick.  People didn’t see me on the days when I was bedridden and unable to function normally.

I did make an effort to explain what was happening to me and thought that I had been successful with a few of those closest to me. I didn’t realize until after I wrote my book how many people never understood despite my efforts to explain. My sister came to me in tears after she read my book, apologizing for not knowing how sick I had been.

Make an effort to talk about your ME/CFS struggle. If you have a copy of my book, share it. Ask others to read it. There are many other personal accounts of struggles with ME/CFS.  Share the ones that match your own experience.  Make every effort to communicate what has happened to you.  Have you had any successes?  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

8 Comments

Donna

7/15/2014 10:23:34 pm

For nearly twenty years I hid my illness as best I could from the outside world. The only ones who truly understood were those that lived with me: my husband and kids. Why? How do explain something so complex in an oral paragraph? My catchphrase became, "It's like having the flu everyday." A lot of the comments were hurtful; most were unintentional; some were not. There were those who thought it was an illness that I invented to avoid unpleasant tasks or obligations. I didn't understand...how could they think that I had suddenly turned into someone else? Eventually, I realized how can I expect others to understand when they have no point of reference? That realization led me to the conclusion: Then, how can I place judgments on other people when I have no point of reference to their lives? That has been the gift that having ME/CFS has given me.
A year ago I became financially involved in a documentary film in development about ME/CFS, "Canary in a Coal Mine." Its producer, Jen Brea, inspired me to come out of the closet, so to speak. If this young woman was willing to expose her life for the greater good, the least that I could do was begin to share my struggles to promote greater awareness to our plight.
My mother was not without compassion, but until I gave her a copy of "Defeat CFS" to read earlier this summer, she didn't truly understand. It has led to a much better, more honest relationship between the two of us. Thank you, Martha!
Last week's blog and Tim's heartfelt comments put me in a quandary. Do I share our most recent, emotionally painful experience? The experience tested my code of conduct; it took me to a place where survival contradicted one of my late father's codes, "We take care of our own." I have decided that I will share.
My husband and I have been married for 34 years. As the years passed, we increasingly became the "go to" people for many of the problems that my husband's family faced. We are both caring people, willing to help others when we can. Without going into specifics, I will say that there are varying degrees of dysfunction among the family members, and that many of the their problems were of their own making; although some were quite tragic. As our own lives became more difficult due to my disease, we continued to involve ourselves in their problem-solving. Eventually, we became to view these relationships as co-dependent and attempted to set boundaries in hopes of building healthier relationships. For the most part those attempts were in vain. We began to distance ourselves, moving away, having less contact. But, it continued. Due to the stress, my husband developed an anxiety disorder. With explanation we sought understanding and compassion from his family to no avail. A year and a half ago, my husband suffered what would best be described as a 'nervous breakdown.' At that point we severed all contact with his family to aid in his healing. With professional help he again attempted to re-build some of those relationships, but was met with anger, hurt and confusion. He re-lapsed again and again. We realized our very survival depended upon 'divorcing his family.' It has taken a year to disentangle ourselves, a very painful year. Last week the final detail was completed. Has the weight lifted? Is the healing completed? No, but in time it will, and we are focusing upon bettering our lives. Thank you for listening. I shared in case any of you have or are facing a dilemma similar to ours. Our answer may not be yours, but know that you are not alone.

Martha

7/16/2014 05:54:42 pm

Donna, it takes courage to drop the public face we all hold up in order to reveal our true selves and our struggles. Thank you for trusting us to listen. The one certain thing I've learned about relationships is that they are complicated. I admire your persistent efforts to help your family and I understand your need to separate in order to heal and better your life. I hope that you and your husband find your paths back to health and I'm glad that sharing my book with your mother has lead to a better relationship between you. Thanks for sharing.

Tim Boland

7/18/2014 07:48:07 pm

Donna, you speaking so clearly about your life and struggles of the past years touches me. It is not easy to speak about issues we have faced and difficulties in family. Years ago, I had a wonderful counselor who had faced the issue of codependency herself. When I described my family system, at first I really resented and disliked the label of co-dependent. When I was married, she counseled both of us and one thing I’ve never forgotten was when she took out a yellow pad and drew circles, some representing us as individuals and some as the other people who were pulling on our energy and violating boundaries, this energy from our personal ‘family of origin’.

My counselor said that when we set boundaries, to expect resistance and that those who are used to us behaving in a certain way that they prefer will resist, using many strategies like anger, being irritable or judgmental, the threat of pulling away. It takes effort and time to assert and embrace our own power. Setting boundaries is still difficult for me at times, even after many years of working with my own issues with codependency. There is an excellent book, kind of the bible of codependency, called Codependent No More, which addresses it from the perspective of a woman who as I remember was involved in an alcoholic relationship. It’s also big on the 12 step approach.

Though the 12 step program is not for me, too much dysfunction seems to reign there! But the lessons of the book are so helpful, in helping to recognize important things about personal relationships so deeply and our right to embrace our true selves. I empathize with you and your husband, and the deep pain caused to you by others.

Something I can share is something my counselor shared with me, that we Know inside ourselves something to be true, we sense it, yet others may try to convince us that our intuition, our sense of things is ‘wrong’. My counselor said that this is ‘crazy making’, as after a time in dysfunctional relationships, we may come to doubt what we sense inside, it can deeply affect self esteem and having this feeling about not being able to trust what we feel inside. But those who try to dissuade us from accepting our true selves are the dysfunctional ones, it takes time and healing to really get that.

Just one more thought. I was watching a favorite tv program about a man who had become very ill. Over time he came to embrace his own right to be respected and to live a life in the way he wanted to live it. When he returned to his doctor, his doctor said he had never seen anything like his recovery, the doctor saying aloud ‘I can’t explain it’. The man said ‘I can. My sickness was the way I lived’.

7/19/2014 01:55:26 am

We are all challenged to set boundaries for ourselves and to deflect unhealthy demands from others. Thanks Tim.

7/19/2014 09:47:13 am

Thank you Martha for your latest blog. I have over the past few years learned to discern better who I can share with and feel safe in doing so. There are some who don't understand, some who are tactless, sometimes even cruel in things which I heard back after sharing about my illness. But there are sanctuaries, your blog being a most important part of healing for me. And some friends and family. It is important to share. As I have been going through a difficult time, I also find journaling to be helpful. I appreciate being able to be here.

7/19/2014 09:53:23 am

And we appreciate that you are here :) Thanks, Tim

7/20/2014 02:06:24 am

Thank you Tim and Martha! Yes, Tim, initially we too bristled at the term, "codependent relationship." As the "rescuers" we felt that our intentions were pure and could not imagine that in actuality we were attempting to control individuals and situations. After distancing ourselves, we began to see our role within the dysfunction, and how we were enabling each person to remain stagnant. I believe that it is through the challenges and struggles of the human existence that each of us experience the most growth.
I am also attempting to return to my "true self." I've experienced that heart and soul sense of what is right and true. Occasionally, it contradicts the belief system that I developed as a child. It is then I experience conflict within, but I'm trying to trust my inner voice more. I don't learn my lessons easily; I wish that I did. Often, the Universe needs to whack me on the head over and over until I finally "get it."
Tim, I hope that your difficulties are soon resolved. You seem like a sensitive, compassionate man who deserves the best that life has to offer.

7/21/2014 03:19:59 pm

Thank you Donna for your affirming words for me, I hope for you too fulfillment of your true self. One of my daughters as an infant, would lay on my lap as I talked on the phone or to her, showing a calm like a small Buddha. As we grow during our life times, I wonder how many of us yearn for that part inside us, that part that is still always there, waiting to be recognized and lived.

My experience as a young boy was as a caregiver, a listener to my mother’s worries and woes. She had compromised health and an unhealthy marital relationship. It is as we grow we come to understand our vital roles in helping to shape our children’s lives and our own, hopefully so that we are healthy of mind and body. I appreciate your so thoughtful words, which have literally made my day!

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ME/CFS Support – Talk About What has Happened to You

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