You’re Not Imagining Your Chronic Illness
I am not Imagining my illness, I have lupus. Having lupus is
terrible. It affects your entire body and turns your life into one
giant, sadistic guessing game. Something triggers your immune system.
Turning it into Jigsaw from the Saw horror movie franchise. It then
forces you to solve a series of complex mental and physical challenges.
All in order for you to stay alive. You just never know when Jigsaw will
pop his freaky little clown-doll head back into your world. Just to
force you to go through it all over again. You are also going to be
faced with living in a society that is not always accepting of your
illness. Which can often cause just as many hardships as your physical
symptoms.
While this is all very harrowing, it’s certainly better than the alternative. The alternative
is having all the symptoms of a disease like lupus but not being given a diagnosis. You get the same limp, same lung problems, same pain. But instead you’re relegated to a corner where you are neither seen nor heard. You get to be traumatized by a freaky ass clown-doll that looks and acts just like Jigsaw. The difference is that you didn’t get copyright approval so you have to call him “a clown-like puzzler.”
is having all the symptoms of a disease like lupus but not being given a diagnosis. You get the same limp, same lung problems, same pain. But instead you’re relegated to a corner where you are neither seen nor heard. You get to be traumatized by a freaky ass clown-doll that looks and acts just like Jigsaw. The difference is that you didn’t get copyright approval so you have to call him “a clown-like puzzler.”
Consequences
You
don’t get the disability insurance or a legitimate reason for missing
that day of work. You get awkward shrugs, remarks like “you’re just not
trying hard enough to feel better” and maybe even hate mail because
you’re a ‘faker.’ You can’t sit with the lupus crowd. That seat is
taken, sorry. There’s just no room for you. This is exactly how it feels
when you’re really sick but the doctors are either too clueless or too
overworked to run the gamete of tests that can tell them why you’re so
sick.
There is no national awareness day for “Unnamed Illness that
I Swear I’m Not Making Up.” You can’t buy a t-shirt that says you’re a
warrior battling “Something, I Promise It’s Actually Something.”
People’s reactions.
People
ask what’s wrong with you and when you try telling them they just shrug
and say “oh,” or “it’s all in your head, have you tried
antidepressants?” (Let’s point out that those people are also
downplaying depression, which makes them jerks). The worst part of that
is that you start believing these assholes.
You
look in the mirror and see someone who is probably just chronically
lazy. Maybe your immune system is only failing you because you want to
be sick. Who knows, perhaps that emergency room doctor was spot on when
he said you just like the attention. Just admit it, you get a bit of a
thrill from spending 12 consecutive hours in that hard plastic hospital
chair just waiting to be told there’s nothing wrong with you. Oh wait,
no. They are just assholes. Don’t believe what they are telling you.
Diagnosis
A
diagnosis means acceptance, support, awareness, and — most importantly —
the right prescriptions and therapies to treat a disease. It can get
incredibly messy for people with symptoms indicative of diseases like
lupus, multiple sclerosis, rheumatoid arthritis or fibromyalgia. Lots of
the symptoms of these diseases mimic other diseases. Pinpointing a
diagnoses can turn into a painful trial and error. It can spans anywhere
from a few months to a few decades. Sometimes you’ll figure out which
disease it is based on an assembly line of needles or scans, and
sometimes those tests won’t be able to help at all. On average it can
take 6-7 years to be diagnosed with a disease like lupus, but some
people still die never knowing the cause of their ailments.
If
you’re a woman with symptoms of a disease like lupus, it’s quite common
for you to be told by doctors that you are exaggerating, or even making
some of the symptoms up. You could even be accused of being drug-seeking
or attention-seeking. When you sit there and hear those accusations
from an authoritative figure like a doctor, it’s really hard to defend
yourself. It’s not easy to remind them that they could be wrong. It
takes a lot of guts to tell them that they might need to check for other
diseases, they’re probably sexist, and that they keep viewing you as a
statistic instead of a living, breathing human being with goals and
aspirations.
Seek help.
In many cases, the more you seek
help for your symptoms the more stigma becomes attached to your medical
records and the harder it can be to get the help you so badly need.
People
who are chronically ill but haven’t received a diagnosis deserve the
same care and compassion as those of us who were lucky enough to find
our ribbon color. We need this awareness to find us a cure. To finally
get some answers, we also need awareness to find them a disease.
It is not you.
I
won’t sit here and pretend that there isn’t some lingering
psychological trauma that builds up inside of you. After spending that
many years of your life wondering what you are doing wrong. Wondering
even if maybe it actually is all your fault. I felt that emotional pain.
Being tossed back and forth between doctors and diagnoses. I had no
clue where to turn because I didn’t know what disease I should be
googling for support groups. I thought that no one would really
understand what I was going through.
When I started trying to
articulate what was happening to me I realized that I wasn’t alone. It
was hard to find articles and essays written by people like me, people
who existed alongside of me in limbo. But, when I stumbled across those
special few stories I clung to them and found support. I wasn’t the only
one stuck in the in-between. And when I finally met a doctor who gave a
damn and took the time to figure out why my immune system was being
such a diva I was so relieved that I wanted to give her the biggest high
five ever. The fact that you want to high five the doctor who tells you
that you have lupus is a sure sign that not knowing is the hardest part
of being sick.
Keep fighting.
We can probably change that
though. Not knowing will never be easy, but if we talk about the demons
that lurk in that shadowy corner more often I bet we can ease the pain
and confusion just a little bit. So let’s do it. Let’s tell our stories
before they have a title. We shouldn’t feel like we have to wait for
that confirmed diagnosis before we hit the publish button. So what if we
don’t know how to tag our posts? We need a narrative for this messy
chaos that exists between healthy and diagnosed illness. And we really
need to actually listen to people when they feel like it’s the right
time to tell us their stories. As a community we have to do a better job
of telling sick people that we believe they are sick.
If you’re
one of these people stuck in the no man’s land that is undiagnosed
illness, please remember that you are not alone and that there is still
hope. I spent almost a decade thinking I would never be on the other
side of this story, speaking from the perspective of someone with a
disease that has a name, yet here I am. Even though your blood work came
back negative and there was nothing alarming in your scans that doesn’t
mean it’s all in your head. Find another doctor. Demand a different
test. Don’t listen to your great aunt who thinks you’re just a
hypochondriac.
Keep fighting.
You’re Not Imagining Your Chronic Illness
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