Can You See Me?

I know better than to go outside in the heat of the day, especially when it’s blazing sun and 95°. But we were out of corn, tomatoes, and stone fruit, the locally grown produce that I love and are only available in Massachusetts for 3 months a year.

My workday had started early and would go late, so I took a lunch break to drive to the farm stand. 

But driving into the parking lot, my heart sank at the people waiting patiently on a long line to enter one at a time. Pandemic norm. The heat radiated from the asphalt and I felt the panic rise. The urge to not waste my time won out, though, so I gritted my teeth as I walked to the back of the line.

Sure enough, it took less than 5 minutes for my body to crash in all its familiar ways – bladder leaking, vision dimming, pain radiating in my feet and back. I could think of two choices: to leave or to ask for help. I knew that leaving would just raise my frustration level to high. So I walked to the front of the line and said (in what I hoped was my sweetest and hopefully not pathetic voice) to the woman who was next to enter,“Excuse me.  I’m not well and can’t stand in this heat. Could I go in front of you?”  Shaking her head no, she said, quite loudly, “I’m hot, too.”  She added, “Hey, if you’re sick, you shouldn’t be here. You could infect all of us.”   

Double whammy. First, she was asking, what made me special? Nothing that she could see with her own eyes. Second, she was afraid she’d catch what I’ve got. Right? But how could she know my “sick” isn’t contagious?

And that’s the thing. No one could tell from looking at me that my body was sinking at that moment. Even those closest to me often miss the tipping point when I go from fine to awful in a heartbeat. Which means it’s on me to do the work, to identify:

• when I need something from others,
• what I need, and
• what to say so my needs get met.

A tall order when your body is crashing. The online resource, Disabled World, estimates that 10 percent of Americans have some sort of invisible disability, including people with chronic medical conditions, which are typically unpredictable, invisible.

The truth is that when you live with debilitating chronic illness, interacting with the world around you can be a physical and emotional draining on an already taxed system.  This becomes essential when your livelihood is at stake.  It is that much more difficult when no one can see your experience (“Getting pushback when you just say no”). The work to keep working can be a very heavy burden to carry.  It’s easy to understand why too many living with chronically debilitating health leave the workforce. Even though doing so, often leads to devastating financial and personal loss (“Work, what does it do for you?”).  

But, it’s not really a choice, is it, when the odds are stacked against you?

So, what about the American with Disabilities Act, the ADA? Like many civil rights acts, the ADA has made valuable legislative improvements. But those improvements focus primarily on visible disabilities (i.e., handicapped bathrooms, ramps, etc.) in part because they are easier to mandate. Even so, as a recent NY Times Opinion Piece points out , the visibly disabled continue to feel that they are  ‘invisible’. Thirty years after ADA passage, “ …People with disabilities are the largest minority group in the United States,…we remain invisible.. represent about 20% of the population… live in every state and in every community… members of all social and racial and ethnic classes…present in most families. But we are still often subject to the same unthinking responses to emerging problems that ignore the needs, issues or concerns of disabled persons. In most cases, we remain an afterthought.”   

There is no way to track the number of people with disabilities since it relies on self identifying. There are estimates of the numbers living with any given disease. But how disabled or debilitated a person feels or perceives themselves to be ranges widely. According to one estimate from the World Health Organization of the 61 million adults in the United States estimated to live with a disability, only around  6% use visible supports, such as a wheelchair or cane. That means there are quite a few people in the U.S. living with an invisible disability. WHO estimates one billion worldwide live with disabiity.

And now, we’re hearing about the long term, debilitating and chronic symptoms from Covid-19.  It seems that the there is a growing number of people, of all ages, entering The Kingdom of the Sick. As they face the myriad of challenges in learning to live with unpredictable and debilitating health, sadly, they will also learn to live with the invisible. 

Maybe there is a sliver of hope that the sheer number of people whose lives are being changed from living with Covid 19 chronic symptoms will bring shifts. Shifts in public perception, values and laws. 

Can you imagine a time when living with debilitating, disabling health problems is considered the norm, something to work with, rather than ignore?