In the world of chronic pain and autoimmune diseases, belief is a hard thing to come by. I think that this is generally something, as humans, that we struggle with. We want answers and the truth. Yet we are so jaded and confused by ambiguity that we have a hard time believing in anything completely. I think this is why even those I love most struggle to believe me. What they are missing is that by not believing me they are not believing in me and the strength I have to overcome.
When I first was diagnosed, I remember a
colleague, and friend, stating in front of a room full of co-workers, “So your
disease is psychological and all in your head?” Yes, I want to pretend to be
ill just so everyone around me will not believe me. It was always a life goal (NOT). A few weeks ago, someone who I thought was family drank alcohol and let
down her guard. She proceeded to mock me by making fun of how I carry myself
(this included limping, shaking, leaning over in pain, etc.), the things I say
when I’m in pain reaching out for help, and repeated “poor disabled me.” Just a
few days ago a family member made fun of someone with Fibromyalgia. To attempt
at not offending me she first said, “I know you’re in actual pain, but this
person…” What makes them so different from me?
Why is it so difficult for us to believe in
something we cannot see or feel ourselves? I often wish those closest to me could feel what I do for 24 hours. Why is it so difficult giving love
to those in our life by accepting their truth? Having an invisible disability
is one of the hardest things I have ever faced. I have learned how to conquer
my pain, how to ask for help, how to advocate for others, and how to balance my
life. However, I still do not know how to perfectly cope with most everyone
around me not believing me.
Through the stories I shared above you can
see that even those who have carried me into bed, held my hair back when I’m
sick, tried to feed me when I can’t move, and wiped away my tears when I could not breathe from pain STILL DON’T BELIEVE ME! Some family members share their
doubts, and we can have constructive conversations about it. My mother kindly admitted
that she assumed “people like me” were drug seekers. I admired her for her
candor. So what did we do? We talked about it. I communicated my truth, and
shared that I’m sure there are some out there who are drug seeking. Most
importantly I tried to impart that WE ARE NOT ALL THE SAME and A FEW BAD APPLES
DOES NOT MEAN WE ARE ALL THAT WAY! Most of us are facing real struggles, and
are being judged based on an impression a few individuals left. I think this is
a lesson we can apply to many issues today.
We are all human. We are all carrying pain in
different ways. So why don’t we just give love instead of hate through
disbelief and prejudice? When someone first discovers my 5 illnesses, or even
just 1 of them, the way they treat me automatically changes. What is it fear,
judgment, or false expectations? I would love to know. Due to this
change in treatment, I often choose to hide my disabilities 85% of the time. I
know I am not alone in this. The stigma around being ill is so harsh that
telling employers, professors, friends, and dating partners is absolutely
maddening and terrifying.
Often I am treated as if I am just seeking
attention, drugs, sympathy, pity, or an excuse to have things easier on me than
others. It is easy to get angry and passionately volatile. Whether I am keeping
it a secret or being judged, I am angry. Truthfully, anger is just an easier
way to protect myself from hurt. There is nothing worse than shame. I WILL NOT BE ASHAMED OF MY TRUTH.
I did not ask for my illness. I did not ask
for the assaults and abuse that caused my illnesses. Yet, these illnesses have
taught me more than the ignorance I face. It has taught me to reach out to
those in underprivileged situations. Most of us haven't chosen this path or the
privilege our society is based around. We need to give love, support, peace,
kindness, and throw prejudice and hate out of our thoughts and actions.
So, how best are you supported? How have you
been affected by the stigma of chronic illness or an invisible disability? How
have you inadvertently hurt someone with these struggles? How do you think we
can best communicate these issues?
Never give up the fight. Remember our battles
give us awareness that is deeper and at times more painful. I believe that this
gives us the responsibility to show others, through our actions, how to give
love and acceptance. I am not perfect at this, but each day I hope to fight to
be better and love harder.
<3 Another Chronic Pain Warrior
