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