The Project

Body Dysmorphia

The problem is, that no one sees what I see. They tell me they wish they had a
body like mine, but I feel so unhappy with myself all the time. It helps when I
can hide underneath my clothes.
Sometimes my dysmorphia gets so bad that I won’t leave the house at all.
Sometimes I make myself starve to lose another 2kg for an event. Sometimes I
shave my legs until they bleed, afraid to leave a single hair.

– Nicole

Carcinoma

It all happened so fast. A few weeks ago there was nothing, hardly any
symptoms, just an abnormal scan. Then suddenly I was scheduled for surgery
with talks of radiation, chemo and long term plans. Everyone I knew tried to
help by sharing their own stories.
My team of doctors was incredible. I got lucky. I got my life back.

– Eileen

Celiac Disease

I was always a sickly kid, ridiculed and bullied for being ill all the time. Doctors
couldn’t figure out what was wrong with me. As a teen, I found a magazine
article where the author spoke of her experience with undiagnosed Celiac
Disease. It finally made me understand what was happening: my immune
system was constantly attacking my own organs. I still get “glutened” by the
smallest speck of flour and dedicated gluten-free food facilities are nearly nonexistent.
I wish people took this disease more seriously.

– Katrianna

Chronic Fatigue

The biggest thing that the fatigue has brought about is a feeling of falling behind
and isolation. I no longer have the energy to do normal things, and I feel I watch
from a distance as everyone else I know continues with their life, while all I can
do is rest and wait to feel better.
More complications have arisen and it’s all just gotten worse for me. Even one
class would make me so exhausted that I would go home and sleep like 12-16
hours. I’m sleeping while everyone else is graduating.

– Sage

Chronic Pain I

Sometimes it feels like my body is a rickety Wall-E to everyone else’s Eve. It takes
me longer to do the same things and longer to recover.
I have started adding “and that’s ok” at the end of all the fears and grumps.
It’s taking longer than I thought, and that’s ok.
I spent an hour not doing this task, and that’s ok.
I’ve been down this spiral for so long I can tell it’s actively worsening my
chronic pain, and that’s ok.

– Jo

Chronic Pain II

Against the Current
I imagine that
my pain is made of chimes and bells
ringing sharply in my joints, jangling through my flesh
They resonate in disharmony, no melody to be found
Only the wind that fills me with this sound,
An urge for flight, perturbed, profound
The silence between notes
a rhythm of desperation
Which has become the beat of my wings.

– Mythee

Cystic Fibrosis

And I hope that you don’t suffer / But take the pain
Hope when the moment comes / You’ll say…
I, I did it all
I owned every second / That this world could give
I saw so many places / The things that I did
Yeah, with every broken bone
I swear I lived.

– I Lived by One Republic

Dementia

My grandmother Toma loved cats, telling stories and collecting colourful
wrappers to put up on the kitchen walls. My grandfather loved to sing.
Toma’s neurological decline lasted many years. After her death, I visited their
apartment again. A lot of the wrappers had fallen off and the kitchen was quiet.
My mum said it had felt like Toma had “aged backwards” during the late stages
of her dementia. I still imagine her, lovingly decorating her tiles with her
precious collection, like children in Russia often did.

– Kat

Depression

“Come and watch the skinny kid with the steadily declining mental health
And laugh as he attempts to give you what he cannot give himself.”

You say the ocean’s rising like I give a shit
You say the whole world’s ending, honey, it already did
You’re not gonna slow it, Heaven knows you tried
Got it? Good, now get inside.

– Bo Burnham

Diabetes

There’s 2 types of diabetes. Type 1 and Type 2. Both are chronic illnesses in
which the pancreas is not working like it should.

– Cherry

Living with Type 1 diabetes can be like riding a roller coaster. A slow moving flat
track can change to an extremely fast ride that is flipping around in circles while
you are screaming in terror, then all of a sudden it’s back to slow. This can
happen multiple times a day and even multiple times in an hour.

– Tyler

Diaphonization

Diaphonization is a century-old technique where chemicals are used to render
the soft tissues of a specimen transparent and the thus revealed bones are dyed
in red and blue hues.
Unlike the other entries in this book, this is not a disease or condition. Rather,
this method was revolutionary at its time and enhanced the understanding of
bodies and anatomy. Sometimes, there is beauty after death.

– Bo Burnham

Ehlers-Danlos-Syndrome

I was told my whole life I was overreacting to pain. We think the EDS caused the
deformity that made me need to get my foot reconstructed – so, I think a really
common feeling with it is being overlooked and not taken seriously.
It’s predominantly among women and the mascot is actually a zebra because of
an old medical saying “when you hear hoofsteps, look for horses, not zebras” to
push providers to focus on the common diseases. Unfortunately, we’re the ones
who slip through the cracks.

– Sana

Endometriosis

Endometriosis is largely an invisible disease. I am a straight sized woman, but
five days out of the month I look pregnant. However, endo makes it really hard
to actually get pregnant. It’s a challenging topic to try to discuss with folks who
don’t understand it and so I’ll usually not share instead.
The pain that accompanies this disease is generally the worst part. The scariest
moments are the instances where I am curled up on the floor and the pain is so
severe that I don’t know if it’s ever going to stop.

– Sara

Infertility

In some cultures there are beliefs about “ghost babies”, where a miscarried fetus
is never truly gone, but stays with the mother forever.
Modern science now proves that fetal can cells actually migrate from the womb
into the mother’s bloodstream and tissues, potentially even contributing to the
mother’s own health.

– Emily

Irritable Bowel Syndrome

I have experienced countless lost hours and anxiety around my bowel
movements since I was a child. It is a difficult topic to talk about, as it is usually
considered impolite or gross to announce that one is constipated or has
diarrhea.
Instead, I have dealt with phrases like “We thought you fell in!” or “Looked at
memes for too long again, huh?”, while awkwardly laughing it off. Planning my
trips around stops to the toilet has become second nature.

– Kat

Kidney Failure

For house cats kidney disease is a frequent silent killer. Cats are excellent at
hiding their pain, so they rarely show any symptoms until they reach stage 4:
incurable kidney failure. Grieving and wracked with guilt we ask ourselves: How
did we not see this coming?
The only way to catch kidney disease early is by doing yearly blood panels with
a veterinarian. Let’s try and do our best by them.

– Kat

Migraine

A migraine is not “just a headache”. A proper bad one can render me
incapacitated for hours. It feels like my skull is bursting open again and again.
Bright colours, smells, sounds – it all becomes too much.
Sometimes the pain lasts for days. It makes it hard to sleep, to eat. There is only
so much time I can take off work until I have to make myself work through the
pain. Today, I have been told that my pain scale is quite skewed, since I am so
used to enduring.

– Alina

Myopia

After a long hike while travelling solo, I slipped into a beautiful cove to cool off.
I was relaxing my whole body until a wave came out of nowhere and knocked my
glasses clear off my face. Realizing I would be more or less blind for the rest of
my trip, I started searching desperately. The choppy waves meant I had to hold
on to a rock while barnacles ripped my skin. My foot found a spiky object, then
something smooth: my glasses! I still have about 50 small sea urchin spines and
a bunch of scars to remind myself to be more careful next time.

– Alan

Osteogenesis Imperfecta

I like the image of a cockatoo. Many people with glass bones are quite quirky,
loud, colourful, even strange (no one is compensating), all while being selfaware
and confident of the fact.
It is the point of origin for the way you move through the world – both literally
and mentally. There are setbacks of course, but they come and go, like the
seasons. Mostly, it’s about acceptance, be it through pride or neutrality.

– Berit

Radiation Therapy

After my throat cancer surgery I spent four days in the hospital. I had to eat
from a feeding tube. I had to relearn how to speak and swallow. Then, to insure
it didn’t spread, I received six weeks of radiation treatments. That sucked even
worse. I lost 20 pounds. I couldn’t taste, I got radiation burns, I could barely eat,
and I cried a lot.
I’ve missed performing. I’ve missed my friends. But mostly, I missed talking and
thinking about anything other than cancer.

– Sam Riegel

Sciatica

All nerves in your body are connected. A tingling in the foot can stem from a
tilted pelvis, the muscles in your back, and can even be felt when inclining your
head. Numbness in your leg can indicate a pinched nerve, misaligned vertebrae
or be the result of the body compensating for its natural asymmetry.
Sometimes I am struck by how odd it is, to be piloting this bag of meat and bones
that is all connected in more ways than I could ever imagine.

– Kat

Scoliosis

I was 14 years old when I first went to get an MRI for inexplicable lower back
pain. Despite doing sports multiple times a week and being an active teen, I
sometimes was in so much pain that I could not walk up the stairs. The only
bearable thing was to stand in a hot shower and groan.
My spine is bent in two places. Not bad enough to need surgery. I have to do
stretches and physical therapy and STILL end up in pain if I am not careful.
Sometimes I get mad at the unfairness of it all.

– Kat