Tuesday, October 11, 2011

Where We Separate Ourselves (more lessons in humility :-)

Last week someone who has ME/CFS* posted on Facebook that she found it comforting to be able to connect with “fellow sufferers.”

I recoiled at the term. I have ME/CFS, have had it for twenty-eight years, but I like to think it’s just one of many factors in my life, that I choose not to “suffer” about it, that I accept it and work with it. My compassion for someone who experiences themselves as a “sufferer” was tinged with just a faint hint of judgement and a desire to separate myself a little.

I should know better.

A few days later, a dear friend who lives three thousand miles away came for a long anticipated visit. I had been very careful in the week before her visit, doing all the things I know help my physical energy and strength. After a relaxed day together (that ended at 4 pm) I was bed-ridden with exhaustion, dizziness and the debilitating pain that is so often part of this illness. I had to modify plans for celebrating another friend’s birthday the next day, cancel Thanksgiving dinner with my sons, and tell a friend whose birthday is next weekend I will probably miss his celebration. I was deeply discouraged.

So much for not being a “fellow sufferer.”

We cannot control all the conditions of life, and expectations can lead to disappointment. But human beings can’t avoid having expectations. We would never see friends if we didn’t make plans, and plans raise expectations of something (hopefully pleasurable.) You can’t cook a meal to share without planning and going to get the ingredients, and that creates an expectation of something tasty. And yes, sometimes the plans are disrupted- people get sick, power outages make cooking impossible, or the dog eats the pie.

Disappointment comes from a combination of unavoidable expectations and the inability to control all conditions. But disappointment can be a momentary twinge and not real suffering if we can hold our expectations lightly, without deep attachment to having things work the way we would like.

Sounds good, and it’s not impossible much of the time. I know I have an unpredictable chronic illness. I’ve learned to keep my expectations realistic, to warn those with whom I make plans that I may need to cancel, to change planned activities based on present-moment physical limitations. And mostly I do not suffer- I feel a twinge of disappointment and let go, realigning to current conditions.

Except when I can’t.

Except when, for whatever reason, I have a moment or an hour or a day, of feeling something more than disappointment, of feeling . . . .crushed, angry, bewildered and discouraged. And then I suffer.

And then, (eventually) I surrender to what is, readjust my expectations, sooth my own suffering with gentle self-care and. . . . return to being able to embrace the present moment- whatever it holds- without suffering. This process does not happen faster if I chastise myself for not living up to the spiritual ideal of never suffering, is not enhanced by adding suffering over suffering to the mix.

So here’s the truth: we all have expectations. If we can hold them lightly, remaining flexible and able to shift our weight to stay in balance as conditions beyond our control change, we will not suffer over the small disappointments in life. And sometimes- because what is changed by conditions matters more than an anticipated dinner party or planned trip, because changing conditions may affect how we are living and will live for a long time and/or happen on many levels simultaneously, or simply because our inner our outer resources are depleted- we will suffer.

Yes, we are all “fellow sufferers,” some of the time.

If we cannot admit this, cannot accept that to be human means we do at times suffer, we will find it hard to respond to suffering- our own or someone else’s- with the compassion that alleviates suffering.

*Myalgic Encephalomyelitis (ME) is categorized as a neurological disease by the World Health Organization and is misnamed in North America as Chronic Fatigue Syndrome (CFS.)

Oriah (c) 2011


  1. Dear Oriah, this article could not have come at a better time. My body has decided 3 years ago it had enough of my pushing it's boundaries, being better, being a 100 % teacher and therapist and I am really really struggling. Just today I decided not to fight against my body but rather with my body, listening and adjusting to it's messages. I am dealing with Thyroiditis/Rheumatoid Arthritis/coeliac and I too refuse to be a sufferer....

  2. Angelique, ah this surrendering seems to need to happen again and again. It would seem that we are all "sufferers" at times- perhaps we just learn faster to recognize it and let go into what we cannot change in this moment. I am so grateful for the FB comment because refecting on my reaction really did help me soften to suffering- mine and others' :-)

  3. It's the difference between being a 'sufferer' and being someone who sometimes suffers. And to deny the latter is to give the instigator(in this case symptoms) more power, more credence.

  4. Jeanlu, lovely distinction- and yes, it is indeed about acknowledging the suffering without creating a solid identity around it. :-)

  5. I have to keep reminding myself that if someone says something to me that upsets me then I have to look at myself for the learning and not point the finger outward.
    I have Parkinsons disease I hate been called a "patient ".Why? I guess because sometimes I find it hard to accept this "dis ease".
    Not suprising but instead of getting annoyed with the person who said it I need to look inward .
    Is it possible for me to reference your blog on mine ?

    Love your work and every time i read "the invitation" I get somenthing else from it .Thank you

  6. Mags, happy to have you reference/link a blog post to mine. And I really get not wanting to be seen as "a patient." I think the "trick" with illness is to face what is (ie- step away from denial) without turning the disease into your identity. So, part of your reaction to being called a patient may be that you simply do not want your identity to be shaped or determined by the disease, don't want to be pigeon-holed by this one factor in your life that is not who you are. blessings, Oriah

  7. Hello Oriah, I thought this might be of interest to you. Maybe, maybe not. The Bewitchery of Medusa - Jung page


  8. Thanks for the link- very interesting although not entirely applicable as Fibro and ME are not the same disease. Many folks with ME also have Fibromyalgia but I am fortunate in that I have very little and have found ways to prevent it. Have often thought about ME from a Jungian perspective- always eager to get all the meaning I can from the challenges :-)