Day Five:
People assume...
Oh god where do I begin with this one. There
are so many misconceptions regarding endometriosis. I think today’s “challenge question”
is a very important one. I now feel responsible for breaking some of the
misconceptions and assumptions regarding this invisible illness. I’ve decided
to break this one down and talk about the main assumptions that people make, in
my experience.
People
assume that I’m faking
Endometriosis is an “invisible illness.”
This means I look fine and normal on the outside even though my insides are
diseased. I appear normal, but I’m suffering with pain. I’ve noticed that
people assume that I am faking when in reality I am suffering terribly. I have
a number of times where I’ve dealt with this assumption, but I am going to talk
about two big ones for the purpose of today’s challenge.
My mother assumed that I was faking for
attention. I look completely normal on the outside and until 2011 the doctors
had no explanation for my pain. My mother then assumed that I was faking being
in pain for attention. This is very, very hurtful. I struggled with a lot of
anger, angst, and the feeling of defeat while trying to make it clear that I
really wasn’t feeling well, even though the doctors had no explanation for my
pain.
Doctors assume I’m faking for drugs. I
remember being at work this one day, and my pain got so bad I decided that I
had to go to the hospital. My father dropped me off at the urgent care center
close to home, and I had to wait for hours to get in to see a doctor. When I
finally got into a bed, I had some tests run and the nurse discovered that my
urine test dipped for blood. The nurse was very concerned, as I was in so much
pain I was sweating, shaking, and shivering. I had been vomiting from the pain
so I was very dehydrated, and it took the nurse half an hour to get an IV in my
arm. She was lovely, and concerned for me, and she thought it would be worth
getting an X-ray and/or ultrasound done, to maybe see if we could find out why
I was peeing blood.
When the ER doctor finally showed up, the
nurse had fixed me with a morphine drip. The morphine had successfully taken my
pain from an 8 down to a 2 or whatnot. I was feeling so much better. The ER doctor was horrendously unprofessional. She looked
like a whore and she made a personal comment regarding birth control that I
found unprofessional and in bad taste. She read over my file and asked me what
was wrong. I explained to her (as best I could while I was a bit high on
morphine) that I had a history of endometriosis and I was experiencing severe
pain while at work. She pressed on my tummy, which I found very painful, then
asked if I had any questions. I asked if it was possible that the endometriosis
had spread onto my bladder and perhaps that’s why I had blood in my urine. She
said no it wasn’t possible (for the record, it is, and that’s why I’m awaiting
my 3rd surgery with a special specialist). She then dismissed me
from the hospital, without running any tests, offering any reasons for the
pain/blood, and without any take home pain relief. I was appalled. I could
hardly stand on my own and she just brushed me off.
When my boyfriend had taken me to the ER in
June 2014 after I had fainted and vomited at work due to my pain reaching a 10,
the male ER doctor was beyond sweet. He performed a slew of tests and
examinations, put me on a couple doses of morphine, then sent me home with a
package of Percocets for pain relief. He was amazing. A man, who had never personally experienced pelvic pain and the like,
was more understanding and compassionate than that awful she-“doctor”. I really
think she thought I was faking and trying to get drugs or something. Nevertheless
I am convinced that she slept her way
through med school #SorryNotSorry.
People
assume endometriosis is just bad period pain
I have a very hard time trusting, relating
to, and getting along with women. Very rarely do I open up to another girl, and
when I do, I have many reservations. I have made a couple friends in my
post-secondary studies, and upon explaining to them that I have a disease that
causes severe pelvic pain, I hear “I get bad periods too.”
When girls say they have "cramps too" I'm like:
People
assume that endometriosis is a mental projection
It’s been suggested to me and said to me
that the pain is my fault and I’ve caused it with my mental state. I took that
for a while, and was somewhat convinced that I was crazy.
The first gynecologist I ever saw when I
was 18 years old said I was too young to have any gynecological problems and
that my pain was made up in my head. Someone had told me that if I change my
attitude I will simply get better. I’ve heard so much bullshit, some of it from
loved ones. The thing is, everyone seems to have medical expertise when you say
you’re not well. Suddenly everyone has a cure. Think positive and you will heal
yourself! You’re not actually sick, it’s made up in your head! BLAH BLAH BLAH.
It’s all just noise. The truth is I have swollen bleeding lesions in my pelvis
and my internal organs are adhered together. That’s why I’m in pain. I can
guarantee that some positive thoughts aren’t going to make those go away. Oh,
and by the way, I do have positive thoughts. I do want to get better. But guess
what? That’s not enough to heal me.
People
assume that exercise will relieve endometriosis pain
For some people, this assumption rings
true. Some women find relief with high intensity workouts. Unfortunately, I am
not one of these women. Those of us that have adhesions find it very hard to
workout. In my personal experience, I get increased pain and bleeding when I work
out. Please don’t tell me that working out will make it better. I’ve tried
that.
People
assume that I’m a bad friend or that I’m a flake
I try to live life as though I don’t have a
debilitating disease. I work hard and I’m attending post-secondary. I
experience grinding fatigue on a near daily basis. I have ditched on so many
parties and outings not because I’m a terrible awful friend, but because I’m
too exhausted and sore to go partying at the end of the day. I also realized
that alcohol is a “trigger food” for me, and drinking really triggers my pain
and bowel endo, so I can’t go and drink at bars like everyone else my age likes
to do. I have lost so many friends, and nobody invites me out anymore (I don’t
blame them). It’s caused a self-esteem crash, and since I’ve stopped socializing
regularly I’ve found that my social anxiety has gotten pretty bad again.
People
assume that endometriosis is just a disorder of the pelvis
Endometriosis is normally found on abdominal
structures, but it can also be found on other parts of the body, including the
diaphragm, lungs, and in rare cases, the brain. While it is commonly described
as a disorder of the pelvis, I have found that endometriosis, especially in
more advanced cases, is a whole body disease. My daily pain is not restricted
to my pelvis. I regularly experience headaches, fatigue, depression, and
anxiety. A study has shown that those who suffer from chronic pain have a hard
time making simple decisions. Chronic pain affects the whole body. I also
experience whole body pain with co-morbid disorders related to my endo. My
doctors are on the fence as to whether or not I suffer from fibromyalgia. I
often find myself sleepless and I experience arthritis-like pain in my joints,
wrists, and fingers. I have regular stiffness and some mild pain in my left
leg, which is related to the adhesions I have in my pelvis and the allodynia
which has caused the pinching of my femoral nerves, according to my specialist.
Aches and exhaustion are two terrible things I am quite familiar with. Some
days I need to rest after simply getting up and brushing my hair. Sometimes I
feel so faint and exhausted while showering that I have to sit down and shower
sitting down. Sometimes getting dressed is far too exhausting and I have to go
back to sleep. It’s very difficult to go to work and school when I’m too tired
to go up and down the stairs on my own. Endometriosis
is more than a pelvic disorder- I’ve found that it affects my whole body.
People assume that I'm lazy
I promise I'm not lazy! I don't go out much because I'm sore and tired. I can't always do housework and cleaning because sometimes I don't have the strength or energy to shower and walk up the stairs. I don't take naps or lay on the couch or ask if we can sit down because I'm lazy, I do it because I'm hurting and if I stand on my own two feet for much longer, I'll fall over. Literally. It's happened before.
How I plan on cleaning my house from now on:
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