It's hands down the most common question we face in social settings. For many of us, it's also a question that sends our hearts into our throats.
My career has been derailed, snuffed out, and put on hold a lot over the last decade. So, I've faced quite a few opportunities to choose between telling the truth and maintaining my dignity in small talk situations.
For long months and even longer years over the last decade and a half, my truth has been life as a grown woman, ostensibly sound of body and mind, yet dependent on her parents, achieving and earning absolutely nothing. My disease, and the effort spent on treating it, often demanded far more time and energy than any 40 hour work week. But according to the value system I've been raised in, my lack of accomplishment appears synonymous with lack of effort and merit.
In the privileged sectors of modern western society, we've come to optimistically believe we exist in a meritocracy, where our worth translates directly into our success. Exceptions to our standard hard work equals reward equation are poorly tolerated, and laziness is a much more comfortable explanation for struggle and failure than invisible illness.
What do you do is our shortcut to quickly judge whether someone is worth our time. While, "I'm taking time off to fight cancer" is a completely acceptable answer, few people underemployed by invisible illness have such an easy explanation. Many of us share similar limitations and struggles with cancer patients, but we do not share their credibility.
In the early years of my illness, I often tried to explain my situation to new acquaintances when asked. But I pretty quickly realized that my story was too uncomfortable for someone to digest at a barbecue or on a first date. We're looking for familiar identities to assign the people we meet, not extenuating circumstances and unfamiliar contradictions.
On one hand, it would be courageous to continue taking every one of those awkward opportunities to get the word out about invisible illnesses and start chipping away at the stigma. With enough confidence and self-love, I could boldly model a progressive new value system where doing one's best deserves respect irregardless of achievement.
On the other hand, my self-confidence around my lagging career is not yet sturdy enough to handle all that poorly disguised judgement and rejection. So to head off the inevitable job snobbery, I often employ some lower risk work-arounds when a stranger inquires:
Bring up a previous job and fail to mention I'm no longer in that position
Embellish activities I'm only able to pursue part time to suggest a "legitimate" occupation
Describe future aspirations like they were already solidly underway
While choosing my ego and social status over total honesty is far from ideal, it feels like a fair arrangement until society develops a little more compassion. Thankfully, the paradigm shift around success and disability is already well underway. I'm encouraged by the wide and growing recognition of Alaine de Botton's work redefining how we measure our worth, along with the momentum of many others with a similar message (Brene Brown, Pema Chodron, Jim Carrey, Neil Gaiman...).
In my own life, I've been grateful to witness a big shift towards recognition and compassion over the last decade. At the time of my horse wreck in 2003, there was very little public understanding around traumatic brain injury. And in the five years following, I encountered a lot of skepticism, eye rolls, and even a few sarcastic air quotes when requesting accommodation for my cognitive issues and migraines. Now, the press is inundated with stories and studies about TBIs, and almost everyone has heard of and accepts the legitimate struggles of concussion patients.
While we still have a long way to go before achieving that same level of recognition for CFS/ME, I can happily report an exponential rise over recent years in the percentage of people I meet who genuinely understand invisible illness. Trauma, mental illness, addiction - other unseen challenges that hold back so many of us are also making their way into the public eye and helping deconstruct our outdated value system.
As much as I crave acceptance from the outside world for my struggle, most of the healing I seek will stem from internal transformation. By far the most cruelty I've experienced around my setbacks and failures has come from my own unrealistic expectations and unforgiving standards. Quieting my gremlins around opportunities missed and achievements squandered requires an unrelenting practice of gratitude and perspective. But in rare moments of self-compassion, I can tap into that limitless potential to give my gifts that illness can change but never take away.
Also, how about we agree on some less aggressive icebreakers?
Rather than "what do you do?" I'm trying...
What are your favorite hobbies? Do you have any pets? Have you read anything good lately?