Within a short time of my diagnosis with chronic illness, I applied for and received long-term disability and quit my job making six figures as an attorney at a major law firm, a job at which I’d only worked for three years, to pursue new avenues of treatment but mostly just to try to survive; feeding and grooming myself was an everyday battle.
I struggled with my feelings of uselessness and failure and because I had spent my whole life chasing accomplishments, and my career had been so all-consuming, I was pretty isolated. I had made a new group of friends but I was uncertain and awkward. What did I have to offer? What were people thinking?
And that brings us to that certain category of people all sufferers from invisible illnesses know: those who will try to make you feel like you don’t matter. One day several years into my illness I saw a post by an acquaintance which basically read, “If you are physically capable of getting a coffee at McDonalds, you can at least work part time at a data entry job.” Now, a normal person on a normal day would merely find this post puzzling. Because just on the face of it, a moment of coffee drinking versus sitting for 5 hours upright at a desk typing seem like very different skills and efforts.
But I thought I knew exactly what those words meant. Because I was worn down from fighting insurance companies and social security and my internal demons, because I was going through a particularly bad period where my illness was enraged and getting worse, because everything familiar to me was changing, it felt like I was fighting everyone, and that post actually meant, “Everyone sees you and judges you. We think you are weak. We don’t believe in your pain. We don’t care if you suffer, we think you are worthless. You are a fake.” Upon reading the last word of the post I burst into long-stifled sobs, deleted my Facebook account, decided I hated everyone, and went to bed.
Society is a bitch. Worse are your self-inflicted torments.
I had only found my circle of friends a year ago, after many years of feeling I fit in nowhere, and now I had to return to navigating my life without anyone but my partner. My illness already controlled my external life. I was not working, could barely make my doctor appointments, could not eat at restaurants or see movies or grocery shop or be a part of the world in any real way. Friendship can keep us connected so that we don’t lose our bearings altogether.
Life was weird. Whether because of the fibromyalgia or the medications, my ability to sleep was erratic. For the eight hours my partner slept, I was especially alone in the world, wandering the house or curled in a tiny ball trying to keep the pain at bay by moving as little as possible. Despite the criticisms about the effect of social media on human interaction, I find that if you’re careful who you friend, what happens on Facebook can be meaningful, if only because we are letting people in and following each other’s triumphs and follies. I had grown used to seeing fellow insomniacs reaching out to the world, chatting a bit; I enjoyed writing even silly posts that my friends could wake up and laugh about. Facebook can be a line connecting the housebound to the universe outside herself. I was a little untethered at night now. My thoughts echoed off each other and settled into unseen places. It was hard to tell if they were real. Sometimes the solitude made them vague and I became silent inside. Sometimes it made them too real. There was no outlet for them, they grew and grew in proportion until my mind cried out.
It took me an entire year to recover from that incident and realize that upon seeing the nasty post I could have reached out to a dozen friends who would have tried to understand, who believed in me even if they couldn’t quite relate to the pain and fatigue of fibromyalgia. But to do that, I had to forgive myself for being ill, and cease buying into our bizarre Protestant work ethic that connects labor and success with human value. I had to examine my grief. Some of it was important, certainly I had lost a lot of dreams: traveling extensively, having the kind of financial security I had hoped for, but most of all, excelling. In that year I had to internalize something new, something that was very difficult to accept: I am valuable because I exist in the world and because I’m capable of love. It’s not a complicated thesis, but in offhand comments of others, in the platforms of politicians, in the themes of movies and television, I was constantly reminded that it’s not society’s thesis. Insomuch as this is true, society is wrong. Human beings are important for their own sake. And the narrow-minded judgement of others hurts less when we aren’t buying into their story.
Now I allow myself a McDonald’s cup of coffee (maybe even Starbucks!), and many good friends, to accompany me on this painful journey. My friends forgave my absence and now, years later, are my family. Simply knowing that I’m not alone nourishes me in the darkest of nights.