"It's because you're tall," my mother would explain every time I would nearly faint upon rising. "It just takes the blood longer to get to your head."
Now I know that this phenomena is called "syncope," and that it has nothing to do with my being tall.
I have endured various unexplained symptoms since I was very young, at least in junior high, such as constant fatigue, weakness, shortness of breath, syncope and feeling faint upon standing, light hand tremors and muscle spasms, restless leg syndrome. Physical therapists have described me as "hyperflexible," which I took as a compliment--not everyone could serpentine their arms behind their back or touch palms to the floor with little effort. My skin is velvet-like and marble, according to others. But the pain of degenerative disc disease, strange twinges of discomfort throughout my body, and a tendency toward migraines kills the glow of any compliment about my physicality. I bruise easily, and those bruises sometimes do not heal for months. Sometimes, without warning, I feel incredibly delicate, like I will shatter from tapping my finger on a table.
And people have told me for years that this is all normal.
Recently I tested positive for orthostatic hypotension, which means that when I stand my blood pressure drops and I become very dizzy, lightheaded, and faint, with my vision usually becoming grey and fuzzy. Kind of like static on an old television. I first noticed that my dizziness was becoming worse (than the usual stand-up-and-spin scenario I've lived through for two decades) when I began a job two months ago that requires me to stand for nine hours a day. On April 15th, 2017, the day before my birthday, a friend had to pick me up from work early and drive me home because I was feeling so lightheaded. Two weeks later I drove myself to immediate care due to my symptoms becoming worse. And the week after that, my doctor's nurse, unable to get me in to the office, told me to go to the ER when I was so dizzy that I could barely stand and was having chest pains.
"Orthostatic hypotension," said the nurse. The doctor at Immediate Care mentioned POTS, or Postural Orthostatic Tachycardia Syndrome, which is a type of dysautonomia. The ER couldn't find anything common wrong with me and recommended a specialist. Ehlers-Danlos Syndrome keeps popping up in my dig through symptom explanations.
I have known for years that something is not right about me. My twin sister and I were born two months premature, and while she suffered from weak kidneys, I had bradycardia. Liquid caffeine supposedly fixed my heart, but my sister has suffered from kidney problems her entire life and is now in the final stages of failure, preparing to go on dialysis and transplant lists at age 29. I didn't stop to think that perhaps my medical complications never simply vanished when I was finally brought home from the hospital a month after I was born.
I have tried to keep my complaints to a minimum, citing the excuse that I was too tall, that I just needed more sleep than other people, that I was a wimp and that was why I nearly fainted running a mile for a gym final my sophomore year. Normalizing my symptoms has become second-nature, so when a friend on Facebook mentioned that my experiences sounded a lot like POTS, which she has, my first reaction was, "No way." I couldn't have a chronic illness, I was far too privileged. I was supposed to be healthy and had no reason to complain, perhaps I should just exercise more...despite the fact that cardio causes me to become dangerously faint and lifting weights is painful.
Of course, I have been telling my PCP about my recurring symptoms for over two years now, about the length of time in which I have been her patient. "Stress," she would chirp, or glibly explain that I was having anxiety. I have been medicated for depression and anxiety since I was fifteen, and was diagnosed with ADD two years ago, so most doctors see that in my chart and make it their primary explanation for whatever physical symptoms I might be experiencing. "Somatic." All in my head. A side effect of medication. Nevermind that I have been enduring most of these symptoms for longer than I have been medicated, or that my depression only hit after I had been lightheaded and weak for several years. Co-morbidity is rarely something that a medical doctor looks for, in my personal experience. And heaven forbid that a young, conventionally attractive, healthy-looking woman have actual health problems! It is obvious that she is just histrionic, turning her psychological turmoil into physical complaint as a cry for attention. Despite my misgivings, I convinced myself, "This is my doctor. I trust her to advocate for my best health and care. Surely that trust is not misplaced."
I couldn't be more wrong.
Perusing articles from The Mighty on my phone during work breaks, I have skimmed through horror stories of young, supposedly healthy women being taken as fools by their doctors, being told that their complaints are psychosomatic, normalizing archaic notions about the correlations between femininity and pain, ignoring warning signs of legitimate illness because of their inherent gender bias. Not my doctor, I thought. As a woman, she must have experienced the same prejudice in her own dealings with medical professionals. I'm sure she will listen to me."
Determined to find answers, I had fought for three weeks to get an appointment with my increasingly difficult-to-contact doctor. Speaking with her nurse on several occasions, I knew that the office took my worries seriously, assuming that my doctor would back me, or at least be open to testing me, when I asked her if I might have POTS.
I didn't expect her to laugh at me.
"Is...is that funny?" I managed to spit out, while my cool-as-a-cucumber doctor chuckled dismissively.
"POTS is incredibly rare," she said, tone dripping with condescension.
"Then why do I know several people who have it? Why do studies show that at least three million Americans suffer from it?" I shot back, knowing now that the only person who was going to advocate for me was myself. She shut up. I demanded a referral and a release of information to the doctor of my choosing. The air changed when I took charge, and I am damned sure that the doctor knew right then that she would never see me again.
I am still standing for nine hours a day. I just tell myself to power through the dizzy spells and take at least two fifteen minute breaks in between opening, lunch, and closing so I can sit and gather myself. It usually doesn't work. Terrified of losing my job, I try not to call in unless I am going to the doctor, even if I am legitimately ill. I have even begun wondering what might have caused this mystery illness, and my sister's kidney failure, coming close to unnerving ideas that our illnesses may be related to my father's exposure to Agent Orange during the Vietnam War. I can't say for sure. But I am coming close to finally finding an answer.
It is also terrifying, knowing that my life may change drastically if I find that my condition really is disabling. I do much more than I physically should, pushing myself past the point of physical safety to try and keep up with everyone around me. Knowing that I am allowed to rest is somehow contrary to everything I have internalized about women in my family, who are extreme overachievers and refuse to concede defeat over being a little sick or tired. Would I rather continue to be considered "lazy" and normal, or would I be somewhat vindicated in the understanding that there is something legitimately wrong with my body that causes me to be constantly devoid of energy?
But no matter what the truth reveals itself to be, I beg you, all of you, any of you, just listen. To the person you know who thinks there is something wrong with their health. To the young woman who is being ignored by her doctors. To your own body when it does something you are not familiar with. As I type this I am groggy, my hands have been shaking for two hours, the muscles in my limbs keep spasming, and my head is swimming. I'm not going to quietly downplay what is going on with me or make concessions to people who think they know better than myself about my body.
A couple of weeks ago I let go of my significant other of half a year because he told me that he believed I was inventing my symptoms in a manipulative effort to get attention. I was devastated to learn that, because I didn't look sick, he automatically thought that I was faking it. And that this person I kept hoping would have my best interest at heart would continuously ignore me or impose his own, better explanations for what had going on with me physically for years before I ever met him. "You should just eat breakfast." Um, I do. Every day. I doubt missing breakfast once or twice would cause such symptoms of such severity that I would have to attend the ER (he never checked on me when I went to the hospital, only texting me to berate me about leaving work early).
Please, once again I am asking you to listen. Listen to the people in your life who are concerned for their physical and mental health. That pain in her chest that won't go away. His worries that he can't just "man up" and shake off his depression. Your own fear that there is something wrong. Advocate for yourself and help others who might otherwise be ignored to stand up for themselves as well. There are enough people telling us that our concerns don't matter without us sabotaging ourselves as well.
You have the right to be your own champion.
Undiagnosed
The scattering tremors, keeping my hands from complacence,
are simpler than the stutters in my chest, ineffective
at bringing blood to my crown. A crickercrack haze erupting
before my eyes the way our old console would static itself
awake
at a well-aimed kick from my twin, hoping for a replacement
- nobody believed us about the malfunction then, either.
Now her kidneys are shutting down and my heart is
frantic to make her grievance known. Posture has always been
my strong suit, and stoicism, and silence, so when I can
barely stand
for fear of collapse—
The fog rolls in and the words are void in my skull.
I feel chlorine has washed my eyes in their cases, breath
doesn’t delve deep enough to sustain itself. And yet you
said
I wanted attention. Yes, I could find no other way to garner
heed
than to founder and crack and bend, brain aswirl, into a
haze of pain.
Unhealed bruises from a year ago, the stretch of my blades
and bones
is enough to convince me that my anomalous quirk, present
from youth,
comes not from character deficit, nor desire for praise and
paeans
to my frailty, no matter the
slanders of the able and the cold.
Since the discard you have not
inquired of my shaking hands
and I am pure for the lack of you.
Soon I will find a definition,
an ease of mind in place of an
easy kind of submission, and you,
you, you will heel-rock back like
the doctor who laughed
when I brandish the truth you
would never expect—
You bastard, you were wrong about
me.
