Updated: Jul 16
dis·ap·point | \ ˌdis-ə-ˈpȯint \
disappointed; disappointing; disappoints
1. to fail to meet the expectation or hope of; to FRUSTRATE
2. to fail to meet a hope or expectation; to cause disappointment
Living with chronic back pain and fibromyalgia (which started when I was about 23) means I often don’t have control over what I can and cannot do. If I plan ahead, it’s always with the knowledge that plans might be canceled. If someone asks me for a favor, there always has to be a "maybe," a condition. I will if I can. This is one of the most (emotionally) painful aspects of living with these conditions.
My entire life has been structured by expectations. Expectations are the backbone of my family's ideology. Expectations of achievement. Expectations of status. Expectations of commitment to family. Expectations to show up. Expectations to share feelings and work through conflict. There's a whole mess of paradox here, which would require another essay to explore. Suffice it to say, I was raised knowing what I had to do to be fully accepted in my tribe.
As a result, expectations - fully internalized - lay at the core of my sense of self. And so, to develop a profoundly limiting physical condition, at the exact moment when I was supposed to be launching into adulthood, was...what's the right word? Complicated? It set me up in a constant battle between what was expected and what was possible.
I recently took the test to discover my Enneagram type. I scored highest as a 9, a Peacemaker, and second highest as a 2, an Achiever. So I am ambitious, AND I always want everyone around me to be happy. That alone sets up a conflict, right? Achievement and ambition (at least in the neoliberal/capitalist sense of the words) are easier to fulfill when you don't care too much about anyone else. You can be single-minded and competitive. But as a peacemaker (a.k.a. a pleaser) I would always balance my individual goals with (my perception of) the needs interests of others. It was a constant juggling act.
Until my 20s, this played out mostly in academic achievement and physical appearance.
Academically, the dance went something like this: do well in school but don't brag. Don't make the kids who don't do as well feel bad. When report cards got handed out in class, I'd hide mine under a stack of papers. I'd give vague answers to the question "so, how did you do?" Sometimes, in a class, when I knew the answer, I didn't raise my hand. I would occasionally say "I don't know" even though I did know. I hated being called smart in public. The peer culture of my middle and high schools fed into this too. In those years, the smart kids were called "brains." It was not a compliment. It meant you were extremely uncool. Everyone wanted to be cool. There was - I kid you not - a "brain" table in my high school cafeteria.
I graduated 7th in a high school class of over 300, but never talked about it. (Even as I write it now, I wonder if it's obnoxious to share! My lord, I am 54 years old!) I got admitted to Harvard early admission. I played it down, said it was because I was a legacy (which may well be true, but that's beside the point). While I was there, and after I graduated, when someone asked where I went to school, I said "Boston." I wasn't exactly ashamed of being a Harvard student, but I wasn't proud of it either. I didn't want to be perceived as superior. I didn't want to elicit envy. I didn't want to make anyone else feel less-than. To this day I have a gut-level aversion to elite schools.
In the realm of physical appearance, the expectations were to "look pretty" (but don't flaunt it and don't be "slutty") and stay thin. We lived in an affluent community with a tendency toward conspicuous consumption. Name brand clothes, shoes. Fancy cars. Big homes. Again the careful balancing act. Look good, but not so good that someone else might feel badly about herself. Don't. Stand. Out. Don't. Show. Off. Attract attention, but not too much, and not from the wrong men. Yikes.
My mother and my sisters, and pretty much every girl I knew, was "on a diet" at least some of the time. This was a big deal in my family - my mother talked about having been fat as a kid, being teased mercilessly. She was haunted by it in a "never again" sort of way. She was super vigilant about what she ate. My sisters and friends "watched what we ate." (We all watched what everyone else ate too). We "pigged out" and then compensated by eating only diety foods for a couple days. I don't remember knowing anyone with a diagnosed eating disorder until I got to college, but it was the 1970s and early 80s, so who knows. We were all disordered eaters. Most of us still are. But I digress (again).
Then, in my early 20s, physical disability got tossed into the equation. Already unstable and unsustainable, the competing expectations got totally out of hand. But I didn't see that at all at the time. This is 100% hindsight - many decades later. I found myself in a 3-way tug of war among 1) what I wanted and expected myself to achieve; 2) caring for and protecting others; and 3) listening to my body. That was the thread that ran through my adulthood for 20 years. Until the crash and burn came, but that story is told elsewhere.
Try as I might not to disappoint others -- or harm my body -- it was inevitable. Trade-offs had to be made. Pain kept me from social commitments and family gatherings. Caring for others sometimes meant overriding my body's pain and fatigue signals. Meds I took for pain - and an inability to exercise - caused weight gain. Sitting was (is) my biggest pain trigger so my academic productivity was limited, even though I white-knuckled my way through a PhD program. There are so many stories of these trade-offs, all made without a shred of analysis or understanding.
Since I couldn't reconcile the competing imperatives, I was always doubting or criticizing myself for something. There was just no way to be good enough. And I suppose, subconsciously, there was a fear of excelling too far. It affected me as a scholar, a mother, a wife, a friend. It wreaked havoc on my body image and my relationship with food. There was always someone disappointed or a body throbbing in pain. Or both. All with a nice big bow tied around it for the sake of public appearances. No one knew - not even my closest friends. I was a champion down-player. The very thought of complaining or even asking for help was anathema. I think of it now as "dancing on the head of a pin" (in high heels, backwards -- thank you Ginger Rogers). I did it for two decades.
In recent years thanks to a huge amount of work, I’ve learned to forgive myself when these inevitable disappointments occur. Sometimes I say the word to myself. Forgiven. Forgiven. It’s OK. You are doing your best. This is not in your control. Good enough. Good enough.
That is a powerful practice, one I recommend and share whenever I have the opportunity.
And yet still - at times - disappointing myself or someone else stabs like a knife.
In my work with clients over the years, fear of disappointing has emerged as a huge theme. I’d go so far as to say it’s one of the major barriers to healing from chronic illness. To be clear, when I say healing, I do not mean being cured or even healed. I do not mean becoming symptom-free. I do not mean meeting the conventional definition of "wellness."
Healing, both in my own life and in the work I do with clients, means being able to find peace within the suffering. It means learning to accept the inevitability of variable symptoms without driving yourself crazy looking for causes and blame. It means accepting that sometimes you have to say no and then letting go of the guilt. It means full permission for self care. It means prioritizing feeling good over looking good. It means bringing the trade-offs into the conscious realm and then choosing mindfully. It means seeing clearly that as humans, we are all flawed.
It means rejecting the whole idea of failure.
It means knowing you are inherently good enough no matter what you do, how you feel, or how you look. It means showering yourself with compassion and, always, over and over and over again, forgiving. Forgiven. Forgiven.
It's hard work. It takes a lot of practice, reinforcement, support, and community. It doesn't end, but it gets easier. And it's so so worth it when the voice in your head is more likely to say "you're ok!" than "what the hell is wrong with you?" Lovingly guiding others in this process is my greatest joy and my most profound honor. I will keep sharing the stories as life permits.