In the Company of Others
Hi,
I’m Ellie and I’m a sophomore.
When
I first think of February 8th, 2016, my mind goes to laughing with
my best friend while watching Hannah Montana at 4 o’clock in the morning. It
seems so normal until you take a step back and look around at our environment.
We’re in a hospital ER room, with white walls and fluorescent lights waiting to
find out whether I had a blood clot in my arm or not. This was 4 days after I
had been in the ER for pain and swelling in my arm and was sent home with a
wrong diagnosis and a dismissal because I was “too young” to get a clot.
Watching TV with my friend, I forgot about the IV digging into my vein, or of
the potential consequences of the test results that I was waiting on, or even
the fact that my parents were frantically trying to find a red-eye from LA to
anywhere close to Hartford so they could come and make sure that I was still
alive and breathing when my dad landed 8 hours later. Watching this TV show
from my childhood about living a double life, I realized that I also live a
double life, not as glamorous as Miley’s, however. I wear two masks; that of a
healthy college student, and that of someone living with a chronic illness-
constantly sick and fatigued.
February 4th, I was taking
notes in my social psychology class and suddenly got this intense burning pain
in my right arm. I figured that it was just from fervishly writing, and there
was only about 15 minutes left and I could probably tough it out. The pain got
worse and worse, and finally I was able to go back to my dorm and call my
parents. I called my doctor at Yale, because Davison couldn’t see me until 3
hours later, and I feared that I had a blood clot. See, I’m at risk for blood
clots because I take birth control to manage my hormones for my menstrual and
non-menstrual migraines. However, when I went to the ER, they blew me off. I
told them my medical history and that I knew I was at risk of clotting. Then, I
was lead to a room for 2 ½ hours, alone while the pain migrated from my right
upper arm to my hand, making the area around my thumb blue and swollen. I could
barely touch my thumb to my index finger. There was no one at the nurse’s
station, and when the doctor finally came in, he dismissed my symptoms. I was
too young to get a clot, it definitely wasn’t a clot, my hand definitely wasn’t
swollen, but they might do an ultrasound “just to make me feel better.” At this
point, I had been there for 3 ½ hours alone, I was tired and I didn’t know what
was going on. So they discharged me with a wrong diagnosis that they all knew
was wrong. 4 days later, I was brushing my teeth, about to go to bed when I
feel a shooting pain in my hand. I knew that the clot was back and much worse
than before. When I called PSAFE, I told them to call an ambulance. I didn’t
want to walk in and be disregarded again. However, the ER doctor saw the note from
that Thursday and refused to do any tests. I had to threaten to go to another
hospital because they said that I would have to wait 5 hours to get an
ultrasound and that they wouldn’t run any other tests. After an hour of
arguing, phone calls and pleading, they finally gave me a CT angiogram with
dye, showing that I did in fact have a clot in the right brachial vein of my
arm. The doctor apologized, saying that she was wrong to dismiss my symptoms and
that she was inspired by how well I advocated for myself. Do you know how
common it is for women to get clots blood on birth control? 3%. 3% of women
develop clots, and I just so happened to be in that 3%.
5
years ago I was diagnosed with chronic, intractable migraines. Chronic meaning
that I had more than 15 headache days per month and intractable meaning that
they couldn’t be stopped by medication. Migraines, contrary to popular belief,
are not “just headaches.” They’re a complex neurological condition that has
many symptoms triggered by various factors. For me, my worst triggers are
bright lights, high sounds, vibrations, gluten, soy and anything with tyramine,
which is most commonly found in aged cheeses and red wine. Which sucks because everyone likes cheese and wine.
Now, Everyone memorizes different
things about their lives, whether it’s lyrics from their favorite song, their
favorite poem or something else that they enjoy and hold onto. For me, it’s my
medical history. I can give you the names of all 10 of my doctors, and yes you
heard that right. I have 10 separate doctors who oversee my medical life and
their office addresses, and that’s not even including the ones who gave up on
me because my case was “too difficult”. I can give you my entire medical
history in under 5 minutes because I’ve gotten used to fast intake meetings
with doctors who did not bother to read the information in my charts, whether
they’re at an ER or a doctor’s office. I can tell you every medication that I
take and have ever taken, including dosages. Today, the number of pills I take
per day is 7. A couple months ago, I was taking 12 a day. This doesn’t include
my abortive medications either, that I take when I have a migraine. The
funniest part of my medical life is that if you put my file in a nursing home
and just changed my age, no one would question it! That’s because I am the
youngest person in the US to have ever been put on an anti-Alzheimer’s drug for
migraines, and up until 3 weeks ago I was also on a blood thinner. I also take
Centrum Silver daily vitamins. My friends joke that I am a Jewish grandma
though, because I love naps and am always prepared for everything. I always have
snacks, aleve, lipstick, band-aids and usually whatever else is needed at that
time.
But
4 words have come to typify my life: “But You Don’t Look Sick.” I don’t look
sick because I don’t tell others how I feel all the time. I use makeup to cover
up the bags under my eyes, and balance my skintone because if you saw how pasty
white bordering on green my face is when I’m feeling badly, you’d ask me if I
was okay. And that’s just the thing. I am okay. I’m okay until I’m not. I can
function decently well with a pain level of 4 out of 10, but I’ve learned how
to fake it and to hide my fatigue, memory and word finding issues. You don’t
what it’s like to lose control of your body until you can’t control it anymore.
I’ll be in class, taking notes and listening, when suddenly I just get this
feeling. I get really tired, like the kind of tired that you get after pulling
two all nighters in row. I start to feel my body go weak, as if I can’t support
my own weight. It suddenly becomes hard to find words, let alone even put
together coherent sentences, making communicating what I’m going through much
more difficult. I start feeling like I’m going to faint. Add together those
feelings with intense nausea and dizziness, with a serving of pounding, intense
pain, and that’s my typical migraine.
I’m
not sure if it’s good or bad that I’ve gotten so good at hiding my symptoms.
Yeah, I can get to more classes and appear like I’m a functioning human being,
but at what cost? In the chronic illness community, there is a term called
“spoon theory”, and it’s used to explain why we become so easily fatigued.
I’m tired all the time, even everyday actions
like taking a shower become something that takes monumental effort. In a day,
there are certain things that most people do, like showering, doing dishes,
getting dressed and going to classes. Spoon theory explains that each activity
uses up a certain amount of spoons, of which you only have a certain number per
day, which I’ll say is about 10. There will be some days where 10 spoons will
be enough, but other days when you come up short and can’t do certain
activities because you don’t have enough spoons left. See, it became necessary
to create a theory in order to talk to non-ill people about our illnesses.
That’s because people don’t like hearing about invisible issues. In their eyes,
I don’t look sick, therefore I can do everything that an able-bodied person
can. There’s a certain shame that’s associated with having an illness, be it
mental or medical. I used to be scared to tell people about my migraines,
because I thought that they would not want to be my friend if they found out
this deep dark alternate person that I become when I have a migraine. It’s true
though, I do have a different persona when I migraine. One of my exes called it
“Ellie’s world is ending” attitude because everything becomes extremely
negative and depressing and because of the pain I can’t think or rationalize
anything. I get stuck in these anxious spirals that just add onto the physical
pain that I already experience. I don’t usually let anyone see me. Even my
family rarely sees me during the worst parts of a migraine. When I’m starting
new relationships, I don’t trust easily. I may tell the person about my
migraines, but just the bare minimum. Not the fact that I spent my junior and
senior years of high school visiting the Outpatient Pain Center at Ceders-Sinai
3-4 times a week, instead of being in class. I don’t tell them that I lost
almost all physical ability for almost two years, that even washing the dishes
was enough to force me to get back into bed for 4 hours just to recover and be
able to sit up again. I don’t tell them about the nights that I can’t sleep and
how I cry at 2 o’clock in the morning because sometimes, dealing with this
illness is too much to handle. I often feel like I’m burdening others if I ever
need help, and this includes romantic partners, and no matter how much that
they try and assure me that they want to help, it’s hard to believe them. I’ve
been in too many situations where their actions don’t match up to their words.
See, I’m difficult. High-maintenance. I have numerous food allergies making it
difficult to eat out sometimes. I used to not be able to go to the movie
theatre because the sound and lights would trigger migraines for me. I can’t
keep all of the plans that I make, because I never know when I’ll be
incapacitated. I live in the unknown. It’s a disturbing place for some people,
but recently I began to appreciate it because that is my normal. Every morning
starts with the question of, “Can I get out of bed this morning?” or am I in
too much pain to move. I live my life with contingency plans carefully thought
out, so when something happens, I already have a plan of action and can deal
with it. Living with an invisible, chronic illness isn’t fun. But not having
people to talk about it with makes it so much worse. It is already an
isolating, solitary experience. So, if someone you know who has an invisible
and/or chronic illness, I’m asking that you listen to them a little bit more
carefully and try to see it through their eyes. The people that have done that
for me are some of the most important people in my life, and they have helped
me be able to actually live my life instead of living in fear of my migraines. Thank you.
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