“But
you don’t look sick,” my friend said in disbelief when I told her I was
diagnosed with Sjogren’s Syndrome, an autoimmune disease, along with Fibromyalgia.
She’s not the only one who has said that, either. It has been a common thread
among those I’ve told my story to.
I’m
not complaining. I don’t want to look sick; it doesn’t appeal to my vanity. The
problem is that people don’t believe I’m very ill at all. There are days,
plenty of days that I look sick. I’m usually in terrible pain and laid up in
bed with my heating pads and a cup of tea, with my dogs at my side.
Sjogren’s
Syndrome isn’t well known. I’m starting to think only doctors and dentists have
heard of it unless it has touched a person’s family. So, when I say, “I have
Sjogren’s Syndrome.” Some people say, “You have WHAT? I’ve never heard of it.
Are you sure that’s what it’s called?” No, I’m just calling it that for fun.
Why would I make up a name like Sjogren’s?
Sjogren’s
Syndrome can be very aggressive. For starters, it’s a chronic autoimmune
disease in which the person’s white blood cells attack their moisture-producing
glands. It causes joint pain, and can cause many problems throughout the body.
People
may be more familiar with Fibromyalgia (from the commercials on television) but
they don’t necessarily know much about it or believe that it’s real. Many
people believe it to be depression, or in the person’s head, not real pain.
Fibromyalgia
is real pain. It’s long-term body-wide pain and tenderness in the joints,
muscles, tendons, and other soft tissues. Fibromyalgia is often linked to
Chronic Fatigue Syndrome, depression, migraines and anxiety.
When
I went on disability I was depressed. I loved teaching but I was in too much
pain by lunchtime to make it through the day. To boost my spirits I decided to
have my hair done. I loved talking to my hairdresser, so I told him all about
my diagnosis and that I was no longer teaching and he said, “Come on, this stuff
is all in your head, isn’t it? Just shake it off.”
If
I could just “shake it off,” or go to a counselor, maybe even take
antidepressants to feel better I would. And I have. Just because there are no
outward signs, or someone doesn’t look sick, doesn’t mean they aren’t
suffering. We all show our pain and suffering in different ways.
“But
you don’t look sick,” an old friend said. “And you’re up and about pretty well
for someone so sick.”
I
guess she didn’t notice the cane I was using. “I have my good days.”
I’m
not sure if it’s just the people I know or if people everywhere have lost their
basic sensitivity. Empathy and tact are gone and have been replaced with back handed
compliments and such.
“Are
you contagious,” my cousin asked, trying not to get too close to me just in
case I was.
I
was tempted to stand very close to him and sneeze. Instead I assured him that I
wasn’t contagious.
“Well,
you don’t look sick anyway,” he grumbled under his breath and got away from me
as fast as possible.
Most
of the people in my circle didn’t know what to say to me when they found out I
had Sjogren’s Syndrome and Fibromyalgia. I had gone through what felt like a
million tests before I was officially diagnosed with Sjogren’s After that it seemed like the first thing
anyone said to me was, “I never knew you were sick!” I responded with, “Neither
did I!”
All
snappy comments aside, there are times when people just cross the line from
polite and concerned to rude and insensitive.
After
I went on disability the journalism students where I taught wrote a lovely
article for the front page of the school newspaper about why I had to leave
school. Soon after that I ran into a former colleague of mine, an English
teacher. She asked me where I’d been. Obviously she didn’t read the school
paper, so I told her my story.
“I
never knew you were sick!” she proclaimed. “I saw you almost everyday and you
always seemed fine to me.”
I
told her how I was always in pain and how I was suffering from extremely dry
mouth and eyes, that I had migraines and all sorts of problems. I told her how it keeps getting worse.
She
looked me up and down and shook her head. “You didn’t seem sick then and you
don’t look sick now.”
“I
guess I’m lucky. I would hate to look sick,” I retort. Just as I finish my last
word she had her iPhone out and was on facebook gossiping, I mean sharing,
about seeing me.
Even
friends can be insensitive at times. The people besides your immediate family
that know the details of your life and your illnesses, the ones you might have
cried to or confessed your fears to, throw empathy in the garbage and slam the
door on tact once in a while.
“You’re
so lucky! You get to stay home every day instead of going to work. You’ve got
the life! No responsibilities, just laying around all day taking naps whenever you
want to,” a friend of mine said.
What
luck I have! I have pain all the time. Bad pain. I still have plenty of
responsibilities along with dry eyes, no saliva and pain. But I have heating
pads and a hot water bottle, and pillows to situate myself in a comfortable
position (if there is one).
Actually,
I am very fortunate even though I have Sjogren’s Syndrome and Fibromyalgia. I
certainly have ways to spice up conversations, and, no, I’m not contagious. But,
for the record, I’m glad I don’t look sick.
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