Stage 9 Action Against ME/CFS

Reflecting on the stages of grief, and proposing a 9th (or so) stage: Action. From my blog which I started before arriving here.

Various models assign 5 to 7 stages to the grieving process.

They say we work through grief in stages from denial to acceptance.

I'd like to propose that a further stage, somewhere along the way (let's say stage 9, so we leave 8 open for the time being to anyone who wants to fill in a penultimate stage) (and perhaps this 9 I'm proposing isn't in fact the ultimate stage if you want to add being dead and therefore beyond caring or being in Tir Na Nog and having nicer things to think about or being in heaven and having achieved an understanding of how all the suffering fits into the plan of a god) ahem. Let us, as I say, propose a stage 9. Action.

It's beyond Acceptance. Nor is it equal to the earlier stages of Reconstruction, Working Through, Adapting to Loss. No. Action, real Stage Nine Action, means fighting back.

How do you fight back, if you've lost a loved one? People do it all the time. Make a contribution to the Alzheimer's Association, participate in a bike-a-thon for the Leukemia Society, contribute volunteer hours to the Cancer Society, join a letter-writing effort against a war via a church Service Committe, or join Mothers Against Drunk Driving. When a loved one is taken by an identifiable cause, and we've gone far enough in the grieving process, we get to work, fighting that killer. The fight may go on for the rest of our lives. That's Stage Nine Action.

It works in self-grief, too. People disabled by chronic illness have to go through stages of grief over the loss of a major part of our own lives. It can feel as if the person who we once were has died. We deny the reality of the illness, think surely we're misdiagnosed. We get angry and we ask, "Why me?" We try to bargain with everyone from doctors to gods to get our healthy lives back if we do x, y or z. We get dragged down into depression by the magnitude of our loss of activities, work and friends. We eventually reach acceptance and learn to live a different life, within the limits of the disease.

But acceptance can't be the end.

Beyond acceptance, there's action. Action to inform others. Action to increase research. Action to promote the search for a cure.

Loss and grief change us profoundly, whether we are grieving for ourselves or others. The loved ones of people with chronic and disabling diseases also suffer loss and have to go through grief. We come to the Acceptance stage with new knowledge, wisdom and strength.

These uses of adversity are not to be kept for ourselves alone. We share their great value through action.

Action may be as small as an email, a vote on an internet poll, signing a petition; but every time we take those tiny actions we take them for ourselves, for our loved ones and for the millions of strangers who may at any time be hit by the same force that brought us our own grief.

In my own case, both my children and I were hit by post-viral fatigue syndrome which in two of us developed into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. A small percentage of sufferers recover completely but to cling to that piece of information would be to stay in denial. There is no cure. There is no reliable treatment. There are only a vast plethora of possibilities, all requiring research.

If ME/CFS---your own or a loved one's---has brought you to grief, please consider enrolling in an email list to be notified of quick and easy actions:

Through that link, you can enroll to receive very occasional email alerts letting you know how to help promote critical biomedical research.

Some folks are dead, others can't take action, but you and I can click a button now and then to make a little difference.

So yar, that's what I blogged today, and I encourage all of you to spread the word about that email action list in any way you can. Share it on Facebook, tweet it, write it in the sand at the beach, and keep on hoping.
~ Creek


This is a very interesting idea. I got to acceptance in years 4-5. Stayed there ever since (9 years). I wish I had your fight.

thank you for sharing this. I will read it again tomorrow.

kind regards

I agree
But acceptance can't be the end.

Beyond acceptance, there's action. Action to inform others. Action to increase research. Action to promote the search for a cure.
I think action can be very empowering. (Of course given our funding I think its necessary too! :)). Done correctly action brings us together, makes us stronger and yes, does lift us out of our affliction. Getting enlisted in a cause bigger than ourselves is empowering (even if one must be skillful about it). One problem is that I think we simply have too few options. Hopefully we can develop some more here.

By the way Adam, congratulations on such a quick time to acceptance! Even though I was participating in a practice that pushed 'acceptance' all the time I just never thought to apply it to myself.
Thanks, Adam! I never thought of myself as having a lot of fight but now that you point it out I see that it's true. I hope you'll get there, in your own way and time, and maybe with very small actions at first. I find sometimes symbolic actions can be very meaningful and sustaining.

And thanks, Cort, too, and also so true. That fighting spirit needs channels for expression. I was getting very frustrated in my search for some kind of action to take, just before I found Phoenix Rising. Since coming here I feel much more optimistic about the possibility of doing things that will make a difference.
I like that, Creek.

Action is the stage that I've found very frustrating after becoming a member of Phoenix (I think there are stages in this too, one of which is also Acceptance, as with joining any group).

There's a lot of great debate, polemic, reporting, information sharing.......but do we have any teeth? I think there's great potential. We need to find a way of mobilising our collective intellect and energy. I take off my hat to what people have done here so far, much smarter people than I.

Thank you for leaving stage 8 vacant - I think you knew there was something missing.

I would like to propose Stage 8 : Thinking ......i.e. understanding the knowledge, generating ideas, evaluating them, planning the action, optimising use of our resources.

The action is then wise action................well, sometimes :Retro virus:
YAY! Awesome post creek.

And yanno what? Nowhere in any dictionary have I seen the word acceptance listed as synonymous with passivity :)
I'm in stage 9 now. :) Perfect timing for this blog. Fight the good fight every day!

It would be great if we could figure out a way to collectively have a real impact on the politics and education for the medical profession and the public about ME/CFS. Maybe each of us can only do a little bit every once in awhile but by passing that baton like we're in a relay race, I believe we can make things happen.
I get myself into trouble ALL the time in Stage 9!!! I went from the "lay down and die" stage to the "double fisted fight" stage.

Hugs Creek!!!!
Fingers, I like your stage 8: thinking. Maybe we have to go 123467898989... repeat as necessary.

Talkingfox, true! Acceptance can indeed include action. Should include, I think.

Teejkay that was what I was hoping for, searching for, when luck brought me here to Phoenix Rising. I'm doing my best to get up to speed on the wealth of information here and hoping that we'll create many ways to use our combined power.

Go muffin! And if we do have to lie down and die, we'll find a way to do it in front of the metaphorical bulldozers.
I have to say that perhaps I am a downer but I am not in acceptance. I have this half of my life and honestly, I am in bargaining and denial right now. I am so sick and sicker than I have been. I was in acceptance when I was not this ill. But now, I pray for guidance to help me cope with a change in this disease that is making me think that one day it will kill me. And maybe that is because one of my friends died due to CFS. It has traumatized me.

I am bargaining right now, going over my steps, having tests repeated because this just can't be right! Not that I don't have CFS, but I feel that I have something bigger weighing me down.

The only fight I have is to try and survive. I want to believe that actions can make a difference with this illness, but in 21 years of being ill with chronic EBV which is now CFS, I have seen no great change in treatment, options, etc.

I feel we are ignored. I hope to one day join the fight and make a difference. For now, I will just respond to this wonderful blog.
I guess with me it's always, "repeat as necessary" with those stages. I slip back into anger and disbelief, pull myself back forward into action. Maybe you're in action more than you know, gen, just by writing it all out.
Creekfeet speaks wise words. Getting beyond the trapped soul to reach out and educate is good for me, necessary to giving my life a higher purpose. ME has given me the time to understand much, and has shown me that furious activity is not the only way, indeed furious human activity may be exactly what's wrong with our world. If yo see what I mean

May your good days grow :)
Yeah, not furious activity but well-chosen action when able. I see that an alert hit my email box today from the ME/CFS Action List, so check your mail and take a moment to vote.
Or... well, I don't know about that action alert that went out today. Toyota... Lyme Disease... it won't load through my narrow dialup bandwidth. Anyhow, vote or not, but do check it out, and it sounds like a good alert is coming soon.

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