The Michigan Daily — michigandaily.com
Statement
Thursday, August 5, 2021 — 19
“They did not mean me
when they said disabled”
MARISA WRIGHT
Statement Correspondent
They tell me I look so
healthy. They tell me I’m
just so young. They just can-
not believe it. They ask me if
I’m really sick, like am I re-
ally sure? They ask me if I’ve
actually received a diagnosis.
They tell me it’s in my head,
that it’s psychosomatic. They
tell me it’s part of being a
woman.
There are so many things
people tell me about my own
body. If they’re not telling
me, they’re second-guessing
the information and descrip-
tions I share.
Me disclosing an illness or
disability that is invisible,
which is to say it is not ob-
servable or evident in any
readily apparent sense, often
leads to these kinds of reac-
tions. Without the ability to
observe my condition, many
people question or refuse to
believe its validity.
Aside from any symptoms,
the reality of living with an
invisible condition is that
people — doctors, family,
friends, professors, cowork-
ers and so on — simply won’t
believe you. They will label
you as overdramatic, tell you
that you’re just lazy or call
you a liar.
LSA senior Cheyanne Killin,
who has multiple chronic ill-
nesses stemming from a rare
genetic
connective
tissue
disorder called hypermobile
Ehlers-Danlos
Syndrome
(hEDS), shared her experi-
ence with this reality in an
email to The Michigan Daily.
“Because I do not look visibly
disabled, many people often
assume that I’m not a
tually sick, or, worse, that I’m
actually only mildly sick and
exaggerating my conditions
for personal gain and/or ma-
licious intent,” Killin wrote.
In medical settings, this kind
of disbelief can have extreme
consequences.
Proper
di-
agnosis and treatment are
predicated by a doctor tak-
ing their patient’s concerns
and description of symptoms
seriously. When they don’t,
patients can suffer unneces-
sarily.
It is easier for a doctor’s un-
conscious biases to play a
greater role in their evalua-
tion and course of treatment,
particularly when conditions
are not visible to a doctor,
which is the case for 96% of
the nearly 133 million Ameri-
cans with at least one chronic
illness. In this way, a doctor’s
biases about one’s identities
can stand in the way of prop-
er treatment.
Doctors are less likely to
believe and properly treat
women’s pain than men’s.
Doctors
also
undertreat
Black Americans’ pain rela-
tive to white Americans.
Black women in particular
are harmed by doctors who
dismiss their concerns and
improperly treat them: Pro-
Publica reports that “a black
woman is 22 percent more
likely to die from heart dis-
ease than a white woman, 71
percent more likely to perish
from cervical cancer, but 243
percent more likely to die
from pregnancy- or child-
birth-related causes.” Doc-
tors’ bias against fat people
and queer people also leads
to worse health outcomes.
Killin has felt this acutely
when treated by male physi-
cians.
“I was often told that I was
just anxious, stressed, or
pregnant,” Killin wrote. “If
those were negated, like a
negative pregnancy test, I
was just shown the door
without options or treat-
ment. I’ve been sick since
October 2017, and I am just
now finding out exactly what
is going on with my body.”
For my own primary condi-
tion endometriosis, patients
typically face a diagnostic
delay of seven to 10 years
from the onset of disease. In
my case, a doctor misdiag-
nosed me with appendicitis
— for which I underwent an
appendectomy — seven years
before I received my proper
diagnosis of endo. For those
seven years, my pain was un-
treated and the progression
of the disease continued.
While part of this diagnostic
delay is due to doctors’ lack
of training on conditions that
are traditionally associated
with the female reproductive
system, it is also certainly
caused in part by doctors
who dismiss their patient’s
pain as “part of being a wom-
an.”
Art & Design senior Anna
DeLuca, who has endometri-
osis and chronic migraines,
shared a similar experience
in trying to receive a proper
diagnosis and having doctors
dismiss her pain as a woman.
“Especially if you initially go
in for painful periods, you are
often dismissed because you
know, periods are supposed
to be painful or whatever,”
she told me in a Zoom inter-
view.
DeLuca described the impact
this dismissal had on her.
“And then you’re sort of
hit with that wall and then
you
can’t
say
anything
else,”DeLuca said. “When
you are immediately dis-
missed I shut down, I feel
like I sort of I can’t say any-
thing else because you know
they’re not going to listen
and so, then you try it again
with another doctor and you
get the same experience.”
In addition to complicating
diagnosis and treatment in
medical contexts, the perva-
siveness of disbelief of invis-
ible conditions affects issues
of access to resources for
chronically ill and disabled
people, including govern-
ment benefits and accommo-
dations at school or work. At
the University of Michigan,
the laborious process re-
quired to prove a need for ac-
commodations through the
Services for Students with
Disabilities office can leave a
lot of students out.
DeLuca explained how the
form SSD requires to request
accommodations is “so long”
and requires that your doctor
complete most of it.
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