Yesterday I wrote a blog about the incredible pain that I
have been in; both physical and mental. I even went as far as posting a picture
of myself in my undies. Why would I have ever done such a thing? After all I am
the most private, shy and quiet person you will ever meet. It’s true…. You see I
have a cancer, we all know this. I have scars, I have pain and I have a wealth of
health issues but when I am dressed and in public no one sees these facts. I
have a rare cancer that does not have the same medical protocol as other
cancers. There really is no cure for it; chemo and radiation are reserved to
those very few patients that may respond. Most PNET cancer patients are offered
de-bulking as the best chance of survival. The tragic reality of that is most
patients are unaware they have tumours/cancer until symptoms present; and in
which case usually means the cancer is not so insignificant. Also because of
the fact that SOME neuroendocrine tumours are very slow growing some patients
find out that their tumours have been in their bodies for many years. So with
that preamble no chemo means…..no bald head, no pic lines no obvious signs that
you are “really” in the cancer club….
It is difficult for others to accept that not all cancers
are the same and yet cancer is all the same in that we all have it! Some are
fortunate enough to receive treatments/surgeries or radiation and some of us
just hope that our cancers don’t progress as we know ….we are shit out of luck
if it does.
We live in a society full of people that are conditioned to
believe only what they can see. It is
easier that way. We really don’t understand other people’s suffering. If someone appears to look “normal” than they
must be fine; and we are not always willing to pay attention to invisible
illnesses. This fact causes a great deal of pain to the individuals who are
doubted about their illness. I have myself suffered TREMENDOUSLY because of
this…. People can be real asswipes… I have written about this issue before and
will probably write about it again and again.
I know that you have sat in a waiting room at a walk in
clinic and or at an emergency department and surveyed the room to see who
really needs to be there. You judge because you already have that notion in
your head that people need to look a certain way to be sick. Unless you have a “big
ticket” illness there is no excuse to complain….. the reality is, every illness
has pain associated with it; even mental health issues. Not all medical health
issues have a particular look or effect. I know that we are all judgmental to
some degree about this.
A child has ADD, or is Autistic and is acting up in a store,
you roll your eyes and wish the parent would leave the store… you don’t see
what that child is going through or what that parent is actually enduring at
that moment.. Now see a child with Down syndrome or in a wheel chair and you
are much more tolerant for the “acting out” of this child. You may even have
sympathy for the child and the parent. You know this is true.
When an individual is in a wheel chair or using any
ambulatory aid , do you not show compassion and empathy…run to open the door at
the store, or reach for a product on their behalf at the grocery store? You
know you do it.
This showcases that our society is and can be compassionate.
The problem; even though we are empathetic, sympathetic and understanding it is
only to the obvious of ailments. It seems to me that the out of the box
illnesses are just too messy to deal with or understand so we dismiss them to a
large degree.
Invisible
disabilities are chronic illnesses and conditions that do significantly impair
normal activities of daily living. In Canada 90% and United States, 96% of
people with chronic medical conditions show no outward signs of their illness, and 10% experience
symptoms that are considered disabling.
Invisible disabilities DO affect person's effort/ or ability s to go to school, work,
socialize, and more. Although the disability creates a challenge for the person
who has it, the reality of the disability can be difficult for others to
recognize or acknowledge. Others simply do not understand the cause of the problem;
if they cannot see evidence of it in a “visible way” they just don’t acknowledge
the struggle. Students with cognitive impairments find it difficult to organize
and complete school work, but teachers who do not see an obvious impairment for
a student's difficulties, are often impatient with the child. Just a small
example of many difficulties individuals face….
We feel the need to label or expose our illnesses… to be
accepted. Campaigns of colour coordinating ribbons..Yellow for this, purple for
that…blah blah blah. I often dream of standing on a street with hundreds of
other brave enough people to wear t shirts with sayings like:
1)
I was raped- so I have relationship issues
2)
My father abandoned me – I have trust issues
3)
I have anxiey- I can’t leave my house
4)
I have OCD- it took me an hour to leave my house
today
5)
I have an addiction- I am lost
6)
I have depression- I don’t love my self
7)
I am dyslexic- I failed in school
8)
I have inconsistence issues- I am wearing a
diaper
9)
I feel suicidal- I have no hope
10)
I have an ileostomy- I poop in a bag
11)
I have arthritis- it hurts to walk
12)
I have chronic back pain- I can’t sit or stand
13)
I have cardiac issues- my heart is broken
14)
I have asthma-it hurts to breath
15)
I have Chrons- my belly is in constant pain
16)
I have Epilepsy- I can’t work
17)
I have diabetes- Sugar hates me..
18)
I have an eating disorder- it consumes me
19)
I have Bipolar disorder- I have to take
medication
20)
I am blind-
I can’t do everything on my own
21)
I am deaf- Don’t treat me differently
22)
I am Fat- I have thyroid issues
I bet I could go on for page
after page after page listing chronic illnesses and diseases that are not recognizable
/ visual illnesses. I guess my blog
today is to once again ask people to stop being so quick to dismiss others and
their struggles. I know the pain of this first hand. You know that I have been
doubted about my illness, as some people just don’t understand outside of the
box. Cancer does NOT always = bald or DEATH… some of us live with it………My fault
I guess; I should have died long ago and have failed to live up to the
expectations of societies notion that Cancer is always a death sentence. I look
good… I am thin, I have my hair……but If I took off my clothes and bared my
scars would I still be doubted?
Obviously this is a very painful
topic for me as I have been hurt by others and their ill thought out opinions
of whether I have been ill or not. NOT every illness, disease or chronically debilitating
issue has a face that is exact. Every treatment is different and every patient
is different. I remain that our society
has a long way to go when it comes to how we treat others that have pain/
anguish in their lives. Why can’t we just accept that all of us hurt in some
way….and we shouldn’t have to show our scars to prove it. I feel comfort in
knowing that even Jesus was doubted…..
~Christine~
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