When I was six, I
was hospitalized with Rocky Mountain spotted fever. At the hospital,
I was encouraged to get out of bed, get dressed and spend as much
time as possible in the playroom. I brought magazines and books back
to my room to read and played with other kids who were up and about
on the pediatric floor. There was a girl in the next room with
leukemia, and we made faces and waved to each other through our
shared window. The fact that I was able to play didn’t mean I
wasn’t sick enough to be hospitalized. It meant that regardless of
my illness, I was a child with the same needs and wants as other
children.
Yet, with adults,
the same concept doesn’t seem to hold true. Whenever ill people do
— well, anything — it’s taken as “proof” that we’re
bluffing about our condition. Many of us are confronted by complete
strangers on a regular basis when we go out in public, on everything
from using parking placards to requesting ADA accommodation at
events. We’re challenged more by people we know, who should really
know better.
After I became ill,
I decided to go to my favorite theme park one day. I didn’t do
much; it was a very sedentary experience. I posted a photo of myself
on one of the rides on Facebook with my germ mask on backward, slept
for days to recover from my adventure, and didn’t think much of it.
A few days later, my Mom called me about it. A “family friend”
had seen the photo and was furious about it. She’d apparently
complained to several people that if I was at a theme park, I was
obviously well enough to be working and was pulling some sort of
scam. It had gotten back to my mother.
I promptly
unfriended and blocked the person, but their actions stayed with me.
For most of the next year or so, whenever I posted a photo of myself
doing anything fun, I looked over my shoulder. I always made a point
of describing how sick I was and how I’d needed to rest, and how
tired I was afterward. I felt the need to qualify what I was doing;
to verify that I was still ill, and to remind everyone that there was
more to the truth than what was visible in the photo. Someone’s
ignorance and unkind judgments had made me feel guilty about enjoying
my life to the best of my ability and upset my mom, and that was
unconscionable.
It often seems that
there’s no real way for chronically ill people to win this battle.
Hostile individuals who don’t want to believe that you’re really
ill will find fault with anything you do. There’s no way to appease
them, regardless of how you live your life.
Some chronically ill
people are able to exercise, some are not. Some of us are encouraged
to be physically active in some way to help us maintain function (I
have a series of physical therapy exercises to do every day to help
with some specific orthopedic issues, for instance). Yet, if you’re
seen being physically active in any way, it’s taken as a sign that
you’re not sick after all. Society likes to applaud those Olympic
athletes who fight through their illness or disability to compete. If
you fight through your illness or disability to do something physical
sometimes, such as a 5K or dance performance, it may be seen as proof
that you’re a fraud.
It’s widely
accepted that having a strong, supportive network of friends and
family is helpful to those who have chronic illness. We’re told
that for our own well-being, we should get out of the house once in a
while. However, if we dare to go out in public with friends or do
something fun occasionally, again, some will believe we’re not
sick. And if we spend one afternoon at the movies now and again, it
somehow equates to being able to spend 40 hours a week, 50 weeks a
year, at work.
If you live alone or
don’t have a lot of support, you still have to take care of daily
tasks, but something as simple as buying your own groceries might
actually be seen as proof you’re able-bodied.
If you are too
exhausted or hurting too much to shower, do your hair or dress up
you’ve let yourself go; if you go out with makeup and styled hair,
well, you’re obviously not sick because you don’t look sick.
If you post photos
on social media where you’re looking well people will think you’re
not ill; if you post photos of yourself undergoing treatment, you’ll
be accused of being an attention seeker.
If you tell someone
about the progressive course of your illness, you’re faking it
because your Aunt Edna’s son’s niece had the same condition and
she’s fine now.
Social media photos
and observations of chronically ill people smiling and looking
“normal” or doing errands have even been used to deny or remove
disability benefits, which is quite possibly the most troubling thing
of all. It’s hard to understand that disability determination
specialists, doctors and government benefits administrators —
people who supposedly are knowledgeable about a wide range of health
conditions — don’t accept the concepts of good days, payback and
invisible illnesses that do not always have linear trajectories.
Nobody ever seems to
consider what’s happening outside and around that Facebook photo
they’re snarking about. The fact that it might have been the first
time in weeks that chronically ill patient got to do something really
fun eludes them. They don’t realize how much those activities cost
in terms of pain, fatigue and reduced function. They look at one
photo or one Facebook status about one day and think they’re an
expert on your life.
I’m not sure what
these people think we’re supposed to do every day. We have
incurable chronic illnesses. We often spend most of our time either
at home or in treatment as it is. We’re often exhausted and in a
lot of pain. If we’re not able to work full time, are we supposed
to forgo any and all moments of joy, distraction, social interaction
or enjoyment? Will that help us in any way? Being sick is extremely
hard for many of us. It’s even harder when hurtful, judgmental
types decide that illness should invalidate the fact that we have the
same needs as anyone else. Instead of telling chronically ill
individuals to shake off comments and accusations, maybe the onus
should be on these hecklers to refrain from making them and mind
their business. Is it really that hard to leave other people alone?
Eleanor Roosevelt
once said: “Do what you feel in your heart to be right — for
you’ll be criticized anyway.” I’ve taken those words to heart
when it comes to interacting with others about my chronic illness. I
am no longer particularly nice when I’m confronted by impromptu
judges. Every once in a while someone honestly doesn’t understand,
and politely and succinctly explaining a few things helps them. More
often, though, they’ve already come to their own conclusions and
nothing I say is going to put a dent in their hostility. I won’t
waste my time trying to justify myself to random strangers and
mean-spirited acquaintances who have appointed themselves judge and
jury of my life.
I can’t stop
others from thinking whatever they want about me. However, I can and
do refuse to comply when someone demands apologies, guilt or
justifications from me for getting out of the house once in a while.
Anyone who decides that chronic illness somehow invalidates my needs
as a person — including my needs for happiness and socialization —
isn’t getting an iota of my concern.
No comments:
Post a Comment
Thank you for your comments.
Canadian Insurance News does not endorse any of the views posted. By submitting your comments, you acknowledge that we have the right to reproduce, broadcast and publicize those comments or any part thereof in any manner whatsoever.