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Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
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The Subverting of the ME/CFS Mind

Discussion in 'Phoenix Rising Articles' started by Mark, Aug 23, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Dreambirdie

    Dreambirdie work in progress

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    Oh Jody, what a powerful piece of writing. WOW. It truly hits the mark on how badly people with this disease are treated.

    This line in particular really got me: "The realization of being entirely dispensable and not worthy of concern, or taking a look in on, causes a shrinking effect within and there is no one there to counteract it."

    I spent much of my first 22 years with this illness in nearly total isolation. Most of my family members and all of my so-called friends dissed, dismissed, shamed, blamed, and attacked me for being ill. I was called "pathetic," "a psyche case," "a geriatric case," "a loser," "a liar," and "a malingerer." I was accused of "not being spiritual enough," as if somehow that alleged "defect" was what was making me ill. And of course I was accused of being depressed and told to "snap out of it!" as if I could possibly do that on command.

    At a certain point, after I came out of grieving the loss of my old self (which took about 7-8 years), I got very angry at how badly I had been treated by the people I thought would (and should) care about me. And that anger is what kept me alive, and kept me motivated to get what I needed to stay alive.

    I know there are so many people who have had it much worse than I have. It infuriates and sickens me to think how many more will continue to suffer with this disease, and have little or no resources to care for themselves throughout their years or decades in ME/CFS hell.

    Thank you for giving voice to this. You really told it like it is.
    rosie26, anna8, SanDiego#1 and 2 others like this.
  3. Jody

    Jody Senior Member

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    Thank you db. You said that pretty well yourself.
  4. rosie26

    rosie26 Senior Member

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    Thanks Jody, I still find it very difficult to talk about this part of the illness. I can talk about the symptoms , but when it comes to talking about how I coped with the illness, I don't really want to go there. I barely got through my severe years, but so glad I held on through them. It took every ounce of guts or whatever you like to call it to get through them. I still feel a bit raw and scarred.
    helen1, SanDiego#1 and MeSci like this.
  5. xxRinxx

    xxRinxx

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    That hit very close to home. Wonderful article..the illness is hard enough, but no one is really prepared for literally loosing everything else besides your health. I was 18 and at my prime when i was hit with the sickness, and it was horrifying to see how many of my 'friends'..even family members, just didn't care. It was a big realization being in the hospital, and only having 2 visitors, when I was once a social butterfly who knew everyone. Without my immediate family, and my only friend that stuck by me, i don't know what I would have done.
    August59, SanDiego#1 and MeSci like this.
  6. Jody

    Jody Senior Member

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    Rosie

    I understand. When I was in the worst of it I found it very difficult to talk about too. I think one of the reasons I am compelled to write about it is that I remember what it is like to be so vulnerable, so helpless and so invisible. And I know there are countless numbers of us still going through that. When people go through something so crushing, and live in fear and desolation with no end in sight, it can't be allowed to go on as if it's nothing. Something so terrible needs to be heard, needs to make ripples in the outside world.
  7. Jody

    Jody Senior Member

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    xxRinxx

    I so understand. There is no pain quite like the hurt that comes when people you thought were there for you ... are not. That they can just so easily walk away. There are people who live in my area that I know, if I were to pick up the phone now that I am healthier, would be happy to just pick up where we left off, as if my life hadn't been shattered, as if I hadn't lived in agony that they could have helped allay but they didn't feel like it. I won't be calling those people. Ever.
    helen1, xxRinxx and Valentijn like this.
  8. Jody

    Jody Senior Member

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    Thinking more about what you said ... You find it difficult to talk about, and you shouldn't have to talk about it. You are ill, you are dealing with so much just to survive. And even if you could talk about it the nature of this thing is such that there's no way to know how it will be received, whether the response, or lack of it, will leave you feeling worse because it becomes one more instance of seeing how little you are respected, believed or cared for.

    I was asked to be on a panel a few years ago, talking about poverty. At the time, I was not quite strong enough, not quite ready to go that public in my own community. And, I was still struggling mightily against poverty, frequenting the food bank, juggling bills ... Still being in the midst of it I just could not speak. That was three years ago. We have been walking out of our poverty and partly because of that distance between where we are now and where we were then, it would be far easier to talk about it now.

    It's so hard when you're still in the midst of it all. So that's when those of us who are a little healthier -- who have been through it but are not so immersed in it now -- that's where we come in. And we open our mouths and won't shut them.
    August59, helen1, MeSci and 2 others like this.
  9. Christian Godbout

    Christian Godbout

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    Dear Jody

    You had me right from the title!

    A subversion of the mind … Indeed. Its natural tendency to rely on the "Other" goes astray - the human is a social animal, said one philosopher, - provided he is not sick for a too long time, so it seems! The problem is not the illness, it is its duration… I have become cynical in my own way, perhaps a darker form of cynicism than yours - along the lines of: no one out there was ever born in order to take care of me. That way, I can detach. But that is probably just my mind attempting to play tricks on my deeply rooted social needs.

    I prefer your cynicism, which brings out what human bonds should be about (and what governments should do - I live under the same as yours by the way) . Sometimes I wonder what's worse: Having an illness poorly recognized and researched by the medical Establishment? - Or slowly fading out of existence before your own entourage? When you are becoming Nobody even to thy Neighbor? (I like how you juxtapose the terms). I guess the latter is what hurts most, actually I'm pretty sure of it, - but the former is a damn important issue to address as well!

    Thanks for cleverly pointing in both directions simultaneously, because those two put together really do a job at leaving some "pretty serious dents" as you say in our fragile psyches.
    MeSci and Wayne like this.
  10. taniaaust1

    taniaaust1 Senior Member

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    This article brought tears to my eyes, its so true. Thank you for writing it Jodie, its such an important article. Thank you to PR for allowing such an article to be posted (Im sick of all the postive articles at other ME/CFS places where its like the truth is put aside. I cant resonate to those at all).

    "At a certain point, after I came out of grieving the loss of my old self (which took about 7-8 years), I got very angry at how badly I had been treated by the people I thought would (and should) care about me. And that anger is what kept me alive, and kept me motivated to get what I needed to stay alive. "

    Im the same as Dreambirdie, Ive done all my life grieving and now just feel so angry at the unfair things I and the rest of us suffer. Unfortunately I too used to look upon this world with very gentle eyes, I was an extremely gentle soul who was focused on goodness and this illness has made me have to change, a gentle soul can hardly survive in the world of ME. To survive in this world with this illness, you need toughness, you need to be able to make strong demands to get needs met as other things dont work. Many of us need to be angry to have any hope at all.

    "I am irrevocably changed. I will never see things the same again."

    Ive seen that this world isnt the place I once thought it was but rather is a harsh place where people can turn their backs on the very sick as if they dont exist. I dont like the world around me much anymore due to what Ive seen (I like myself thou as i know it isnt me).
    rosie26, MeSci and Tito like this.
  11. leela

    leela Slow But Hopeful

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    Jody, this is so heartbreakingly, exquisitely written. Thank you for giving such a clear, unflinching voice to this totally overlooked reality.
    MeSci and Wayne like this.
  12. PNR2008

    PNR2008 Senior Member

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    I was an expeditor, I always looked for answers , new ways of solving problems, making things work but I can't fix this illness and time is running out. I am angry at family, medical profession and government. I'm angry that even though I did everything to have a nice home since I'm house-bound, I don't have enough good food to eat and co-pays are eating me alive. I don't look in trouble but I am. I often thought that if things were to change like getting well and having an extra income I'd help people like us who fall through the cracks and don't look destitute but are. I'm sick of people not walking the talk, not taking that extra look to see hard times in a persons face or the hurting of their soul. Good discussion Jody.
    helen1, Wayne, SanDiego#1 and 4 others like this.
  13. GracieJ

    GracieJ Senior Member

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    How many more have to fall through the cracks before our collective societies wake up and see the full picture? I spoke with a young co-worker just today whose symptoms are pointing to something autoimmune. She told me how painful it is to have her immediate family and now her husband of one year discounting her symptoms. She doesn't know what it is for sure yet, but in sharing my journey with her today then coming home and reading this, I feel strengthened once again to share my story as best I can. Sometimes I feel like a Who in Whoville yelling We are here! We are here!

    Many thanks again, Jody. As usual, you have cut to the chase.
    Wayne likes this.
  14. xchocoholic

    xchocoholic Senior Member

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    Great article Jody. It's sad that so many of us can relate to this.

    This illness has been a wake up call for me too. I was totally nieve about how the medical
    profession viewed chronically ill patients until I became one. I'm still shocked that our governments
    who are footing the bill in many cases aren't as informed about our illnesses as we are.

    In a way I was lucky that I've looked near death (jaundice, grey and too thin) several times since getting this illness so many
    of my freinds and family knew how sick I was. I just learned that my family considers me a burden tho. Good
    ol cfs brain fog protected me from seeing that. Lol. I'm not losing sleep over it. I have my noisy neighbors
    to thank for waking me up.

    Meeting others with a chronic disabling illness has eliminated the isolation I felt for about 16 years.
    Thanks everyone for taking the time to post on the web. Tc .. X
    rosie26, Wayne, MeSci and 1 other person like this.
  15. Anabel

    Anabel

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    Bravo, Jody! A very welcome article. I can't say much, right now, because it has hit too close to home (although, that's good - I'm glad you did). I'm very fortunate in that I don't have the financial problems which so many people have and I know how fortunate I am, in that. But the people!! I've had this disease for 24 years and I've seen so many people disappear. I live alone (have an ex and an adult son who is one of the people who has pretty much disappeared).

    I've lived in a condo (same country as you) for four years and, before I became almost completely housebound, last year (fortunately, there's a store right next door which I can get to once every 4 days), I was the most helpful person around here (as much as I could be) because I'm kind and compassionate and caring. I'm a human being. And, oh yeah, everyone really liked me - sure, until I wasn't around anymore. House M.D. had a saying, "Everyone lies.". I have a saying, "Everyone leaves."

    After I became housebound, the people, here, disappeared - again - same thing as has happened all along. They know how ill I am but no one ever offers to bring dinner, for example, which would be such a welcome thing, once in a while. I became immediately expendable. I don't exist. Out of sight, out of mind. Some of them were my 'friends'.

    I'm holding a lot of anger inside, which I never let show - not even to myself. But the article has me in tears which is a really good clue, for me, about how much anger I am holding and how much I've been repressing/suppressing it. It's probably eating me up inside but what am I supposed to do with it? I'm tired of hearing about how people don't know what to do when people are this ill. Use your imagination, people! It's not rocket science. I'm tired of hearing that people are really only concerned about themselves - well, clearly, that's true but it's not right. I'm just supposed to accept all that, which I have learned to do but that doesn't mean that I'm not mad as hell, under it all.

    Luckily, I'm okay with solitude because I like myself and I know I'm a worthwhile, decent person. But I don't like the people around me who, clearly, have decided that I'm nobody, worthless, abandonable. It's hard enough dealing with this disease without having to deal with that, as well - which is why I put it out of my mind, most of the time. But it's always there, obviously, or this article wouldn't have affected me the way I has.

    Um, yeah, this is me not saying much (see first line).:)

    Thank you, Jody. You said what needed to be said.
    Wayne, Sea, SanDiego#1 and 2 others like this.
  16. MeSci

    MeSci Activity level: 6

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    I too had tears come to my eyes from reading this. Not for myself, as I am a coper, and for a long time had no idea that the injustice that was happening to me was happening to so many other people. That was when I really started getting angry. Like Anabel I am OK with solitude, but I know that many people find it difficult, and are not as tough and independent as me. I am more angry for them than for myself, although I have been to hell and back a few times with this illness. At least I came back, and I know that not everyone has.

    Having had no love during childhood, and been denigrated and blamed and belittled and bullied by those who had power over me, I became very solitary, self-sufficient and cynical from an early age. I was/am used to people having a negative opinion of me. Whilst that is sad, and has damaged me emotionally, it has also probably helped me to survive this illness. I started avoiding my parents before I became ill, so that was no loss. It would be nice to be able to make some new friends, but I don't have the energy to spare. One day, I promise myself. My best local friend now lives too far away to see her often. Another good friend from the past lives further away still and we have almost lost touch. I've made a couple of friends online but they also live a long way away. But I know they are there at the end of an email if I need them! That's no use for practical help, of course. I have a few other local friends, but don't feel very close to them or have much in common with them. It may sound bad, but I just keep in touch with them as they are better than no friends at all!

    Like PNR2008, I have long been one to seek solutions, and I still am. With this illness there have been times when I thought there were no solutions, but not now, and thanks to places like this I am optimistic that we will defeat this thing.

    I lived in poverty for 17 years, like others being constantly worried about paying bills, and unable to keep warm in winter (and that is putting it very mildly!). People have said things like "How can you cope with no heating?" I point out that the alternatives are worse: not coping, and dying from hypothermia, or having the heating on and getting into even more debt than I was already. So I coped because I had to. What else do you do?

    I have been counting the years to when I would start receiving pensions, and have been angry at being forced to wish the years away rather than enjoying them. I have stayed as positive as I can, and finding enjoyment from simple pleasures, and I know I am much luckier than most with this illness, and luckier than people facing famine or war.

    I am constantly frustrated at not being able to work as much as I need to, and not being able to develop a new less-strenuous business so that I can dump the current one which exhausts me. I've been trying to develop the new one since 2010 when a serious exacerbation made me realise that I couldn't cope with the strenuous one any more. But things keep getting in the way. This year it has been tinnitus, preventing me from working out the best settings for my audio recorder to record natural sounds.

    But no doubt a lot of people just assume that I am sitting at home all day watching TV, rather than working from home, and that I have no motivation. I have an enormous amount of motivation!

    Now things are easier at last with some small pensions. I worry for the younger ones, and hope fervently that things change before their lives become unbearable.
    helen1, Wayne, Bob and 2 others like this.
  17. Daffodil

    Daffodil Senior Member

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    very well written article. isolation, depression, cynicism, depersonalization, fogginess, apathy, hopelessness, low self esteem, inability to make decisions, and feeling so confused and unsure about anything and everything.....this has been the CFS mind for me. all I can imagine doing if I were to get through this disease, is to recoil further. nothing makes sense to me now, and I cannot relate to anyone.
    Fogbuster, Wayne and rosie26 like this.
  18. David Egan

    David Egan Hermes33

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    Jody, thats a well written article ; you are a good writer. One of the best I've read on this site. I have suffered similarly to you, but Ireland is a slightly different experience for ME patients. Ireland as you will know, is a religious country, and is very judgmental, and not surprisingly it has had a lot of conflict. There is a lot of criticism, denigrating, mocking, belittlement, bad mouthing, judgmental attitudes, bullying and actual violence used against ME patients, and against those with other disabiiities. Ireland is a more aggressive society than Canada or Britain. Religion by its nature encourages judgmental finger pointing, hatred, criticism etc. and this divides people against each other within religions and between religions, and in Ireland and other places such as the Balkans and the middle east, one sees the violent outcome of this. ME patients and other disabled people are seen as soft and vulnerable targets for those with judgmental attitudes shaped / brainwashed by religious extremists. Ireland is a very interesting country, if you want to study the middle ages and very old out dated attitudes to disability. The 2 big ME organisations in Ireland have failed to address this important issue for ME patients but I am sure the same could be said for other countries.
    On a more positive and upbeat note, we are about to engage in negotiations with the Irish government and Health authority to build a national ME clinic in Ireland - our proposal is at www.cfs-ireland.com . Our meeting was re-scheduled in July as the government was involved in a vicious abortion law debate in parliament, and the religious freaks were going crazy throughout Ireland. Some religious freaks were threatening the government with violence. The corrupt police did not bother investigating these threats against the government. The religious freak show ended in late July as the abortion law was passed in both houses. But the religious freaks are still plotting and scheming to bring them down. By the way, these religious freaks are the same people who mock, belittle, despise, hated and judge ME patients and disabled people.
    Wayne likes this.
  19. SanDiego#1

    SanDiego#1 SanDiego#1

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    Jody- I think it is hard to talk about because we know NO ONE WANTS TO HEAR IT. They are involved with their own lives. Sad. I have written off some family members and really should have done it long before I became sick. You find out who are the users and who are the givers. What is really sad is when you are too sick to drive to a Dr. and they are all too busy. Wrote them off first!!! I have had to learn what I need to worry about and what I need to let go. Sometimes that helps- Unfortunately I am every ones Rescuer -so it is hard for me.IF ONE MORE DR. TELLS ME-WELL, YOU DON'T LOOK SICK--I WILL SLAP HIM OR HER!!!!!!!

    Sometimes I welcome the Isolation. It frees me to think about myself!!!!

    Good Post.
    Hope you see better days.

    San Diego #1
    Wayne, rosie26 and MeSci like this.
  20. meandthecat

    meandthecat

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    How can I feel so far from those that surround me and so close to people here? How can people who have known me for 30 yrs shun me and when chanced upon show fear in their eyes?

    Thanks Jody for you are elequently talking of the place that I find myself; memories of a previous life are gone, slipped through my fingers no matter how hard I tried to hold on. As cognitive function crumbled( HAL comes to mind) and I lost memory, judgement and even facial recognition, I lost myself.

    After 8 yrs I am back and I resonate with what has been written; I fought everyone and tried everything to halt the slide, as I sank lower if it wasn't nailed down over the side it went. The lessons I learned were ones I wish I could unlearn for they shaped the new me. Likemost of us ,the world I thought I knew just folded and down I went.

    My Identity had disolved and over the last few years as I got stronger I needed to build a new one. Like a surviver of hurricane or earthquake I sat dazed in the ruins, now and then you recognise something but mostly it is damaged beyond repair.

    I sometimes say that 'I turned to the dark side, you do not know the power of the dark side' and it's only part in jest. I became so angry that fury would burn through me and I learned to use this, it is energy like any other. At first it would leave me drained but now I use it more skilfully.

    There came a time when enough cognitive function had returned and my memories started to
    flash up as vivid snapshots devoid of context or emotional attachment. It was like old pictures that contained someone who looked like me but wasn't; and they started coming faster but I had nowhere for them to go, no hooks to hang them on. I was being deluged in someone elses memories.

    I found a therapist and constructed a system to manage them and the pace slowed and now it is ok. I am me and I have memories of a time before, and bit by bit more comes back to reconstruct the years but I look at the things this person did, the way he saw the world and I cannot understand him. You don't have to have ME to feel this way, but it helps.

    I am not recovered but I have passed through a stage of this illness, even though I struggle with pain and mobility and Stuff I am beginning to grow into who I now am.

    I have supported my daughter through 5 yrs of 'Glandular fever' and now have to supervise a work collegue with ME. I tell people that I don't 'do' sympathy but I practice compassion. I have to look after myself but I see the way my collegue is treated, how compassion fatigue is so quick to set in and how he slides into a non-person category. He describes the Drs visits and I 'know', like watching a car crash in slow motion, the disembling GP, the poorly educated OP's in thrall to the psychocharlatanism so beloved of the UK.

    I always had a naive optomism thinking that I would recover if I could find the way but I didn't have the anger to say 'I'll be back' but I would just not stop and now filled with righteous anger when I step into the consulting room I feel like asking 'are you feeling lucky, .... ... ... ....'

    I often write a post then re-read it and scrub it because though it says what I felt it seems indulgent or some such; regaining my voice my be the toughest yet.
    helen1, Wayne, Sea and 2 others like this.

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