I Dropped out of Society for a Year because of an Off-hand Comment

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.

Chronic Illness and the Self-Worth Conundrum

I have fibromyalgia.  Fibromyalgia is thought to affect around 20 million people globally.   Because the symptoms can be similar to other disorders, often a sufferer has been through a multitude of testing, seen a multitude of doctors, had hopes raised and dashed a multitude of times. Diagnosis may follow years of seemingly inexplicable and incapacitating symptoms.  You may experience the complex mix of relief at being told there’s a name for what you’re enduring, and the disappointment that there is no cure or consistently effective treatment.

In other words, you’re in shock, you’re scared, and not a fun horror-movie night scared.  You don’t know what to expect next.

That’s where I was well over a decade ago.  My initial disclaimers are thus: Fibromyalgia is a very personal disease.  While the cluster of symptoms is the same for every sufferer, the particular symptoms that affect you most and how they will affect you will differ.  Some people will need to stop working at some point, while others are able to continue in their careers with accommodations.  Looking to other people to measure your own symptoms will only lead to fear and frustration.  Look to the lessons and not the particulars of anyone’s story.

 

The Emotions of Severe Chronic Illness

In my case, it was obvious early on that my life was going to change drastically. Pain was slowly preventing me from sitting at a desk, concentrating, even sometimes driving.  But worse was the massive, crippling fatigue that took me to bed (and not in a good way).  I cycled through the various available treatments in a short period; most were ineffective for my symptoms, while others triggered Dante-inspired stomach problems that only added to my impressive woes.  Depression is often a part of the cluster of FMS symptoms; it took me a while to realize that depression was also grief.  I had worked my entire life, sacrificing the experiences normally accompanying high school and college, to secure a place at the top.  What was I without my hard-won, soul-crushing career as a lawyer?  My life had been about accomplishment, and I didn’t know how to separate that from my very value as a human being.

It is natural to find yourself grieving for the life you had, and experiencing that grief may be important toward healing.   But so is relearning what constitutes a valuable person.  Are you telling yourself that if you aren’t balancing 20 activities, if you’re not at the top of your career, if you’re not chauffeuring your children to every possible activity, that you’re not a valuable person?  Stop it.  This is good advice for many alienated members of society.   But it is especially important for a chronic illness sufferer.

In the United States in particular, that good ol’ Protestant work ethic (and doses of Catholic guilt?) has served even to this day to connect personal value with achievement.  We compete for the fewest hours slept, the most stressful activities, the most neglected health.  Stopping is laziness, and laziness is a worse sin that putting ketchup on your scrambled eggs.

Maybe you recognize my story.  You may feel shamed and may carry internalized shame about slowing down to a pace that is healthy for you.  Even as you try to focus on the positive, you hear or imagine you hear the voices of your bosses (with their own broken marriage and lousy relationship with their kids to show for their career obsession), your neighbors, strangers.  In time I hope you will learn that your most important role is to be good at your new job: to care for yourself.

My life is very different now.  During good periods of time (times when I’m not fighting chemical depression), even an unusually perky hour, I seize life. I channel my inner warrior-princess. I try to enjoy everything outside of my pain.  I try to live with gratitude.  For warm baths, hot chocolate, and fires in the winter.  For the comfort and affection of my pets, even when they think swarming or tackling me is an appropriate treatment for what ails me.  For the rare meal out, for another night of not moving in front of the television, for the strength to do the dishes.  There’s no doubt I will often falter, but now that I recognize that I am a whole person, many happinesses are possible.