It happened\u00a0again last night.\u00a0<\/p>\n\n\n\n
While I’d hoped to spend the perfectly lovely party with neighbors and friends who already knew my shameful secret, some well-meaning stranger dropped “the bomb” I’d been fearing and have feared now for 10 years:\u00a0<\/p>\n\n\n\n
“So, Erin, what do YOU do?”\u00a0<\/p>\n\n\n\n
Until 2015 I was a career professional with name notoriety. When I picked up the phone, important people answered. My work was easily accessible by a Google search. I even had my own IMDB page.<\/p>\n\n\n\n
Until 2015 I had a ready (and quite impressive) answer for the “So, Erin, what do YOU do question?”<\/p>\n\n\n\n
But then the illness hit.<\/p>\n\n\n\n
Overnight I went from a working woman to a woman whose body wasn\u2019t working. And within a few short weeks of falling ill, it became apparent that working professionally just wasn\u2019t going to work anymore.<\/p>\n\n\n\n
At first, I stubbornly clung to the idea that this was only temporary: that I would find the right doctor, the right treatment, say the right words to the right gods and that my life\u00a0\u2014\u00a0my beautiful, professional, important, productively\u00a0measurable, life\u00a0\u2014\u00a0would return to status quo.\u00a0<\/p>\n\n\n\n
Well, friends, we’re 10 years out, and the status is most definitely NOT quo.\u00a0<\/p>\n\n\n\n
I’m still alive,\u00a0but I’ve lost that life. And, as the years and doctors and treatments have gone by, one harrowing thing has become increasingly clear: unless one of those gods comes through with a deus ex machina<\/em>\u00a0miracle, my previous life status will never be quo again.<\/p>\n\n\n\n That realization is a heartbreak. A heartbreak on top of the heartbreak of losing my health. But it will not break me.\u00a0<\/p>\n\n\n\n And if you or a loved one suffers from chronic illness, I and others like me are here to tell you that it doesn’t have to break YOU either.\u00a0<\/p>\n\n\n\n “So, Erin, what do YOU do?”\u00a0<\/p>\n\n\n\n I survive.\u00a0<\/p>\n\n\n\n That’s what I do.\u00a0<\/p>\n\n\n\n And here lately I’ve been looking for ways to turn my survival into something meaningful: for myself, for my loved ones, and for anyone else facing down similar demons in a society that tells you that your worth is defined by your work.\u00a0<\/p>\n\n\n\n I’ve had 10 years to ponder the “worth” of my long-since-limited life.\u00a0I can\u2019t write like I used to, lead a newsroom like I used to, run a film set like I used to.\u00a0To date, I haven\u2019t even been able to hold down regular, part-time employment because my symptoms are too severe and unpredictable.\u00a0<\/p>\n\n\n\n In a capitalist society like ours, your worth lies in your productive output and economic input. So if I can\u2019t produce like I used to, and the money dries up, where does my worth lie<\/p>\n\n\n\n I spent the first few years of my illness berating myself for my\u00a0lost\u00a0productivity. I genuinely felt that, because I could no longer contribute to society in my old ways, I had no worth at all. What good was a journalist in her 30s who could no longer write and edit? Whose bank balance had nothing coming in and everything going out to specialists, tests, and failed treatments?\u00a0<\/p>\n\n\n\n To my mind, I was a drain on myself, my husband, my family, my friends, and society writ large.\u00a0<\/p>\n\n\n\n But with age and time comes wisdom, and here is what I have learned in the decade since: worth is innate.<\/p>\n\n\n\n The\u00a0fact that I still balk at that statement tells me just how much mental work I have left to do, but consider:\u00a0<\/p>\n\n\n\n Babies.\u00a0<\/p>\n\n\n\n Human children contribute NOTHING to the workforce, and, as any parent can tell you, they are catastrophic to the bank account.\u00a0Yet not one among us (absent psychopathy) would say that a baby is worthless because it’s not “pulling its economic weight.”\u00a0<\/p>\n\n\n\n So why do we, through societal\u00a0norms and public policy, declare that a baby\u00a0\u2014\u00a0a drooling, inarticulate mess that’s incapable of feeding or toileting itself\u00a0\u2014\u00a0has inherent worth but that an adult with disabilities doesn’t and is “a drain on the system”?\u00a0<\/p>\n\n\n\n It’s time we abandon these long-held (and, frankly, insulting) limiting beliefs about worth.<\/p>\n\n\n\n While it’s true that people with chronic illness live physically limited lives,\u00a0it\u2019s these “worth\u00a0= work + paycheck” viewpoints, and not our inherent selves, that are truly limited and limiting.\u00a0<\/em><\/p>\n\n\n\n For those like me who are suffering, I’ll put it plainly:\u00a0You are infinitely more valuable than your illness and your pain. <\/em>Despite what deeply\u00a0ingrained societal messages have been telling you for decades, even if all you managed to \u201caccomplish\u201d today was brushing your teeth,\u00a0you have value<\/em>. Immeasurable, undeniable value.<\/p>\n\n\n\n You\u00a0are not<\/strong>\u00a0a burden on those who love you.<\/p>\n\n\n\n You\u00a0are not\u00a0<\/strong>lazy or selfish or an impediment.<\/p>\n\n\n\n You\u00a0are not<\/strong>\u00a0worthless.<\/p>\n\n\n\n This shift in mental self-talk is recent for me, and please believe me when I tell you it was imperative that I make the change. My inner monologue since 2015 has been one of relentless bullying and despair. Because I could not bully my body into getting better, I instead bullied my mind, repeating mantras of my uselessness.<\/p>\n\n\n\n