Invisible Illness
I’ve been doing this chronically ill gig for most of my adult life with the last decade being the definition of disabled and housebound. Prior to 2007 when I was able to work, I pulled off the invisible aspect of a life limiting condition with the assistance of accommodations at work and my technology edge. I was good at what I did. Back then I often heard the trite “You look too good to be sick”.
But of course, I was. Few knew the struggle to stand up — the wretched physical pain behind the soothing voice at the other end of a teleconference call. And there were a lot of technology assisted meetings, especially in the final years of my career. Because I was unable to do my job upright at large, though I still knew how to turn my talents into talking points and deliver on time and under budget. Until, I stepped down.
Which I did because there came a time when all of the technology could no longer support the continued breakdown of a dysfunctioning autonomic system. So I made the silent transition from Director of Information Technology to Disabled Invalid Typecasted. Not to say the roll didn’t fit. I am that. But in this metamorphosis, the invisibility of illness takes on not so subtle nuances.
Understandably you instantly become invisible to your co-workers. That’s cool. Because you’ve also become the source of water cooler gossip and walking away from drama and stress is a good thing. But there are always those one or two people you wish still found a way to stay connected to but somehow since you no longer can join the gang at happy hour, there isn’t enough time on their social agenda to stay LinkedIn.
Your PTA and little league mom friends similarly can’t figure out how you figure in to their small town big city Mom’s Night Out retreats. Starbucks may have WiFi but it’s not set up to conference call especially when the person on the party line isn’t paying the two drink minimum.
By the time you loose your livelihood you have already lost most of your family members who don’t understand, presume you are faking or otherwise not trying hard enough. As the years pass and you are no longer contributing to society with a physical footprint and you begin to loose touch with school friends, church groups or other peer circles because you are no longer in the loop, on the fray or leading the way … as you once were. I certainly still hear from friends when they want me to update their resume or find a missing file. Because I’m good at that and my technology prowess keeps me on the rotodial as a goto when their favorite app is misbehaving. I welcome the opportunity to be of service. I do. At the same time I miss when I wasn’t reduced to a cameo appearance on the soap opera of other people’s lives.
Admittedly I’ve gone through several iterations of who I am. My youngest enjoys teasing that I am working on my third failed marriage. In truth, this last chapter of redneck’s wife probably puts me on the fringe of even my most quirky past acquaintances. If folks hadn’t thought I’d lost my mind before, my occasional southern drawl from a jersey girl gone Socal makes them question my sanity. Truth is my husband is the person I talk to the most and the only reason my twang has diminished over the years is that HIS southern accent has lessened much as his tolerance for the cold.
For whatever reason and how unreasonable it feels at times … the less we can live up to the social obligations of our inner circle we will slowly if not completely loose touch with all of those people, places or things we use to love. I can’t fault anyone. The chronically ill are unreliable and inconvenient. If I ask someone to tea at my home, they would need to accept the possibility that I may need to cancel or they may find me waiting out a mid-afternoon hyperadrenergic crisis. Which passes, but it is decidedly not pretty.
“I never know when is a good time, and I don’t want to disturb you.” I often hear as the by-line of someone explaining why they were driving past my house and didn’t stop in. And yes, I don’t hold holiday parties any more, or host craft days, scrap booking afternoons, or Multi-Level Marketing events. So really what do I have to offer?
Each of us feel lonely at times even when our social calendar is full and fancy. And I have my share of feeling like an outcast every now and zen. But I don’t live in that space for long. I am fortunate to have a close knit and freaky funny family and a totally awesome multi-gen home. There is plenty of love to share and embrace every moment of every day. I am not as much bitter, as simply the witness of watching the vanishing (long gone) relevancy of who I once was to the outside world.
