After a long break from writing, due to
illness hitting me, I couldn’t help but begin here. If someone had told me,
when I was younger, that at 25 I would be stuck in an 80-year-old body I would
never have believed them. When I think about my illness what first comes to
mind is a giggle and the thought “talk about a reverse case of Benjamin
Button.” As a child, I used to wonder if someone in coma could hear us, and be
screaming inside. Now I know first hand what it feels like to be Rose standing
at the edge of the Titanic: screaming in a room full of people who can’t here
me. Screaming from the inside while I slowly walk to the bathroom to vomit up
the little I can keep down. Covered in goose bumps, my abdomen squeezing my
insides, my vulva on fire, while I throw up until the dry heaving empties me
completely. Months of torture have passed because my insurance company has
decided to “treat” patients now.
I am in a waiting room surrounded by young
and old people coughing, moaning, and people lying out on multiple chairs. No,
this isn’t the hospital ER, but my pain management clinic. Minutes later I’m
looking at my doctor who is swearing under his breath because insurance
companies have decided to pull this drug from handfuls of patients. They are
not willing to budge no matter how many letters we send in, no matter how much
evidence there is that it was helping. This is it. The moment I was terrified
would come. 3 medications swiped from under me. Here I go back to who I was at
20 years old when first diagnosed. I am headed deeper into the tornado known as
chronic health problems.
During times like these, the advice I get
from others tends to increase. I have to be honest and say that I can’t take
anymore unsolicited advice, messages that tell me to buck it up, comments about
how I’ve let myself go, comments about my appearance, comments about how if I
just pushed through like strong people I wouldn’t be here, and comments about
how I must be doing something wrong.
When someone first hears about my illnesses I
usually hear you’re too young, you should try fill in the blank, or I knew
someone who tried…a better diet, new medications, surgeries, exercise, magic
crystals under my pillow at night, allergy treatments, Chinese herbal medicine,
and the list goes on because you name it I’ve heard it. I’m sure it would
surprise them that I’m on a strict diet, I exercise every chance my body
allows, and I have tried probably everything they have mentioned. I believe
that when people hear about chronic illness they feel fear or helplessness. It
makes sense that someone’s first response would want to be to help cure the problem.
Illness in our society is a weakness. So we must find ways to make the person
stronger. At times, I wish I could say that my illness has made me stronger.
That instead of seeing me as broken or unable they should see me as incredibly
able and resilient. Instead, I usually just smile and nod. I pick my battles.
However, this battle gets exhausting.
The worst thing I have heard, and what I have
heard most often, is that it must be all in my head. I must be in need of major
attention. Yes, I want to be sick. I wanted to lose most my friends because
keeping plans is hard. I want to frustrate my loved ones. I want to be sick
while trying to work. I want to be stuck inside a body that hurts. I want to
not eat acidic foods or dairy. I want to have a hard time eating out. I want to
feel exhausted all the time. I want to struggle with rebounding from travel. I
want to fake being ill so I can avoid serious exercise. Think again.
I know I am not alone in the struggle to
explain to others that you name it and I’ve tried it. The biggest question is:
how do you tell someone without being offensive that you don’t want their
unsolicited advice? How do you explain that you appreciate the kindness of
their intent, but after hearing the same thing five other times in the same day,
I am frustrated and sick of hearing it? If there was a way to cure this, a way
to make me able and better, don’t you think I would be doing it? I have so many
dear friends who do this with the best intentions. Which is why I would never
want to be offensive or unappreciative. Yet, I am not looking for advice. I am
looking to surround myself with those who respect me as a person and don’t mind
my rough days. Bottom line: compassion and patience.
So you tell me, how do you usually handle
these moments? If you are someone who gives advice, then what would be easiest
for you to hear when I am trying to tell you that I appreciate the sentiment,
but I am not searching for advice? When have you had moments of frustration
because you aren’t being truly heard?
<3 Chronic Pain Warrior
