Early on in the programme you are encouraged to stop talking about symptoms, the idea being the more you think and talk about symptoms, the more oxygen you are giving them. This makes perfect sense to me: I believe the mind and the body are inextricably linked. But I accept that this relationship is complicated.
I know that if I focus on positive aspects of my life it is the equivalent of being in an upward spiral. For example, if I focus my mind on feeling well, it tunes into and filters for other information on being well: I may be drawn to more memories of days when I have felt strong and fit; I may carry on with a certain diet plan because I believe it is supporting my health. It is not as simple as if I think positively I will be better. It is because if I focus on those thoughts, I will be open to a whole range of other thoughts, experiences and actions that support what I am trying to achieve.
And of course, the opposite is true. If I am focussing on my symptoms, I can very quickly be on a downward spiral. What is the point of following this eating plan, it’s not making any difference; I may as well eat what I want. I don’t know why I bother with X, Y, Z…I spend all this time looking after myself and I’m still not better…Before I know it I am stressed and not really in the mood to make any decent choices about wellness!
So yes, I thought, I can do this. I can not talk about symptoms. How hard can that be? I briefed Husband and Best Friend, as they are the people I normally analyse how I am doing with. I asked them to not to talk to me about my health so that it would be easier for me. And I have an arrangement at home that if I need to rest I just say I am going to chill out. This sounds like a lovely thing to do, not something an ill person would do.
I have made a conscious effort on Twitter and Facebook to not talk about CFS. I was never really one for having a whinge on Facebook or Twitter but I did like to make fun of CFS, which is still indulging it on some level. I have also made an effort to blog about topics outside of CFS. I have found this hard, as I am a thinker and I like processing what is going on for me. And even though I am much better, I am not 100% well, and when I am drafting articles my thought processes are still relative to CFS. Once again – still indulging it!
And I have really struggled with not talking about CFS with strangers, or when making appointments, or when arranging social occasions. I always feel like I want to explain why I can’t do something. I like to be open with friends so they know if I can’t manage a social occasion it is not because I don’t want to be there. And I don’t want people to think that I am ‘just’ a housewife (a career woman’s worst fear), so I want to offer up an explanation of why I am at home.
So it’s not that I want to talk about symptoms ALL of the time but I do SOME of the time. I feel my life doesn’t make sense to people if I don’t offer some level of explanation. And I believe my writing is not authentic because I am focusing on what I can do and not always talking about how hard it is. But I also know that I have to find a way through this because to be a well person I have to think like a well person.
I asked Kelly for some advice on this topic last week and among the many wise words she offered me was this: ‘Karen, you probably don’t even realise this, but you are saying to me your life doesn’t make sense without CFS.’ *Cue big flashes of light bulbs* She is right. I have forgotten how to be just Karen. I have been ‘Karen with CFS’ for seven years; I need to relearn how to just be me (or maybe even become Karen the successful writer!)
And so I am carrying on with my mission not to talk about CFS; I have found my best strategy is white lies. When I am making appointments, or I am in a situation with strangers and the topic of work comes up, I just say I am based at home and don’t go into detail. If I feel a social situation is too much for me I say I can’t go without justifying myself.
It is work in progress and like many aspects of the programme it is about making a sustained change, which takes time.
But just for fun: My name is Karen. I am strong, fit and healthy (maybe even super toned.) And I am a successful writer. Who are you?
You can read more about me not talking about CFS at Sofa and the City
On the other hand, why do we to hide our illness from ourselves or others. The fact is, CFS is a part of my life. Why not accept CFD, but not allow it to always be the most prominent identity. We already have to interact and survive in a society that treats invisible illnesses as a stigma. This stigma makes it easier for society to ignore the needs and interests of the disabled. While I recognize the link between our definition of self and our emotional/physical well being, I believe that a balanced acceptance of our disease is far better than trying to eliminate it from our talk and self concept. I speak as someone who probably hurt herself more than helped by trying to ignore the existence, never mind the severity, of my condition. And now I am having to face the fact that I am ill so that I can learn to ask for help without shame.
I’m looking forward to reading a book by Barbara Ehrenreich that critiques our “be happy, don’t worry” approach to crises. A key issue is; if it is true that we can improve our health and life with positive thoughts then doesn’t that mean we are only sick because we have the wrong attitude?
I think I’ll focus on balance – acknowledging and caring for my illness but not letting that aspect of my self to always be front and center so there is room for other important aspects os myself.
Thanks for the great blog! Gives me lots to think about.
Hi Rhonda
Thank you for taking the time to share your perspective.
I think for me it is not about ignoring the existence of CFS but about minimising the place it has in my life. I completely agree that asking for help without shame is so important. And of course taking care of yourself is absolutely key.
My perspective is that I am doing everything I need to do to improve my health but by not talking about it – or trying not to talk about it! – I am not indulging the cycle of illness anymore than I have to, or focusing on the symptoms more than I need to.
It is an interesting debate, that’s for sure. The word balance is of course always in the mix!
I wish you lots of luck on your recovery journey…xx
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Karen,
keep writing …gonna come back and read more when not having “chilling” timexxxxxxxxxxxx
Wow…………soooooooooooo delighted to see your email in my inbox and to see your progress. I don’t get on the p.c. much and am on my own journey having had CFS a long time too 11 years diagnosed but in hindsight it was fighting to come out beforehand. It is from my experience such a complicated illness and a real jigsaw puzzle. I have had well periods during this time..got married, had a gorgeous little boy…but it has reared its ugly head again with a bad relapse I am still trying to climb out of…………………but mind-body is a biggy and in my usual verboce way what am trying to say is well done you and your letting go and not talking about it has made a really tough day bring a bit of glimmer back………..
Hi Claire
Thank you for your lovely words. I’m so sorry to hear you are in a dip – that is no fun at all. And his head is very ugly isn’t it!
Keep ‘chilling’ and I hope you come out of the other side very soon…xx
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