As I am just
healing from bronchitis that lead to pneumonia, I can tell you that going out
in public is an act of courage. I often tease about my fear of buses, planes,
theme parks, and pretty much anywhere public! A few weeks ago I took my nieces
and nephew to Sea World. The day before was a serious battle of choices. I knew
that going would mean I would get sick. How do you decide between unforgettable
memories and a week of hell?
I cannot
tell you the countless amount of times I have offended someone who is sick
because I don’t want to be near them. This isn’t because I don’t care about
them or want to be rude. In our society we are often pushed to never stop. Even
when ill it is looked down upon to take a day off work or seclude yourself to
heal. Yet we have growing numbers of people with autoimmune diseases.
An
autoimmune disease in short is a disease in which the body’s immune system
attacks its own healthy cells. Many autoimmune diseases are correlated with
inflammatory conditions. Each and every one of my illnesses are inflammatory. Webster’s
dictionary defines inflammation as “a localized physical condition in which part of
the body becomes reddened, swollen, hot, and often painful, especially as a reaction
to injury or infection.” So stop to imagine this for a second. How do you think
you would look and feel if your esophagus, bladder, vulva, ovaries, intestines,
hip, and limbs are inflamed 80-90% of the time? On the outside you look normal
besides my favorite feature, a majorly swollen body (I could also add that when
you’re sick your body holds onto calories, which means my body is always
holding onto calories. This will be another tangent on another blog!).
My most prominent swollen feature I call my ‘Buddha Belly’. This
came about because my belly is rock hard, huge, and you’ll often see me rubbing
it when I think no one is looking. This is not meant to be offensive or ill
humored; but as I will talk about again, humor is a good safety blanket. To get
you back in the imagination mode I attached a picture of my belly you can see
below.
With this picture and your ideas about your inflamed body
please put yourself back into my shoes. When you wake up, and at the end of the
day, inflammation is at its worst. So now picture yourself going about your
day, each and every move you make, and think about the amount of inflammation
you are carrying. On your way home from work you need to stop by the grocery
store. While at the store, a woman asks you ‘When you are due?!” or you hear a
child say to their mother ‘Mom, that lady is fat!” Or we can make it a really
bad day and have someone confront you about taking a disability parking spot
when you ‘clearly don’t need it’, and because of this they begin a lecture on
‘people who really need the spot that you are intentionally hurting with your
selfishness.’
This is everyday, 365 days of the year. So tell me how are
you feeling about yourself, about your body? I can give you a list of a few I
often feel: exhausted, sore, fat, ugly, frustrated, angry, sad, and run down. Now
I’m gong to make it a bit trickier for you. Take alllll of this and add two
sick people you are working with at the office. You hear their cough, see their
runny nose, and watch them touch the shared office supplies. You know your body
is attacking itself because you can FEEL it, so what runs through your mind
when you look at your kind sick colleague? FEAR.
If the body
is already attacking its healthy cells then imagine how easy it is for
unhealthy cells and bacteria to enter the body and attack. To keep myself safe
I have to make calculated choices. I own endless bottles of sanitizer, keep
wipes in my purse and desk, have tissues in every purse, etc. It’s easy to clean
my space once someone is not around, but what do you do when that person is
present? Cleaning after them, moving your seat in your weekly meeting, or
cleaning your hands after shaking a new person’s hand are usually seen as truly
offensive. How can I tell you that if you have it so do I? What is the smooth
way to explain that I am not trying to offend you, but I am trying to take care
of my body? This can be especially difficult when I’m already frustrated at the
countless amount of people that judge me on my body without invitation.
Humor is the
way I choose to handle it. Teasing about my condition is something I do almost
immediately when meeting someone. Of course, when best I take the time to
explain my condition and why I need space if you are sick. However, most people
are in a hurry in this fast paced world. So this leaves me with fewer options.
There is a fine line with humor though because this opens up the door for them
to tease you about your condition too. No one is perfect. I’ve even had
professors make fun of my illness to full classrooms. I’ve walked in on colleagues making fun of me
while making copies in the copy room.
This is
where I am currently stopping to take a deep breath because I remember that I
am not alone. How many other people in this world face this struggle? Too many
to count. Having an invisible disability complicates the stigma, judgment, and
relationship difficulties those with disabilities face.
This is
where I ask you to think about everything I just threw at you. If you share
this struggle, how do you best handle it? How do you wish you did? If you know
someone or have a relationship with someone with this struggle, how would you
like them to handle it with you? How would you best wish I open communication
with you?
I ask for
compassion and communication. This is where I also add that I am blessed to be
surrounded by supportive friends and family (again, another blog for another
time). Thank you for reading and taking the time to enter my journey.
<3
Chronic Pain Warrior
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