Honestly, for most of my 20s, the idea of the future, living with a chronic illness permanently, scared the hell out of me: full on anxious disbelief that this is permanent.
It sounds naive, but when I was bedridden for a year in high school (passing out 6 times per day, basically every time I walked to the bathroom), I had a lot of time to think about my future. Without realizing it, I always imagined my future without Dysautonomia.
That's probably why I handled it so "well" and didn't seem “down” to anyone. They called me "strong.” I know now that I wasn't strong; I was numb. Numb of disbelief. I was unable to heal emotionally (& own my true strength) until I recognized that and allowed myself to walk through the stages of grief.
When I was homebound, I refused to have a TV placed in my room. I claimed it would encourage me to take advantage of the situation to read more than usual… and I really did take advantage of that time.
However, partly, I was determined to prove I was not what others might assume upon first glance: "lazy, attention seeker, whiner, listless, unmotivated.”
You see, it sounds fun not to go to school or have to work when you're all grown up. But in reality, it's crazy scary to seemingly have your future stolen from you.
Before my compassionate & skilled Duke pediatric team with Dr. Carboni, I was accused of being sick because I was deconditioned from "laying around all the time" based on the "fact" I was no longer an athlete, even though my symptoms started long before I quit swimming. Yes, I was deconditioned, but through no fault of my own. It is acceptable to say that my blood vesssels are deconditioned because of a connective tissue disorder. It is unacceptable to blame deconditioning on a sedentary lifestyle mere weeks after a patient is no longer a competitive athlete. I quit swimming BECAUSE of my symptoms. And I only quit when I could no longer endure inducing such severe symptoms on a daily basis.
This circular reasoning and cognitive dissonance that occurs within many clinics, as well as much of the “research” and language regarding Dysautonomia still frustrates me… but I will continue to transform that frustration into action.
The shocking current reality (in many clinics who do not specialize in this):
Go to counseling to deal with this life changing disability? MD writes off internal dysfunction as psychosomatic. Shed a tear in the doctor's office? Depression is the cause, not a symptom of grievous loss of health. Yes, fatigue is a symptom of depression. But vomiting and passing out daily?
You're likely reading thinking, “This situation cannot be for real!” But it is. It is all too real. And my story is not the worst experience you'll read. It's likely more difficult for the many POTS patients who don't pass out yet feel truly terrible. At least if you're syncopal, most doctors take you seriously initially. You're not completely invisible when you pass out. Things don't go south until they realize you're not a “fixable” case.
Patients may remain marginalized and slip through the cracks forever if major changes do not take place within the medical community. Doctors of all specialties must continue their education and adjust their bias against patients, particularly women.
I am not a wimpy, whining, hypersensitive girl. I am a strong ass woman telling you I had to crawl around my house in order to go to the bathroom without cracking my head open while Sean wasn’t home.
Doctors, do not call me "hypersensitive" or "hypervigilant" in reporting symptoms that disable me. Eliminate this language from your esteemed medical journals.
Community, ask questions.
That guy who, during more disabled days, called me a lazy b**** in front of everyone at the supermarket for parking in the handicap spot didn't know I saved up all my energy for a week to run that precious errand.
Hard core Christians, do not tell me I need more hands laid on me, as if I have too little faith.
Other patients, let's not make these same mistakes with each other. Some of us appear "worse" or "better" than others, but the reality is, we have no idea what each patient had to give up and how hard they had to fight to be where they are now. Maybe they're at their worst or maybe it's been a decade's work in treatment and life adjustment.
Without asking questions, the only full story we know is our own.
Clinical or layman, start every conversation with questions rather than assumptions or accusations.
Are questions not the foundation of all science? Is compassion not the call of all doctors?
Doctors, emulate Dr. Frazier-Mills. She does not call me "hypersensitive" or treat me as a nuisance. She calls me an "inspiration."
I never thought a doctor would compliment me in such a way.
In addition to listening to patients and treating them with compassion, her team created an emotional support group for the Duke Syncope & Dysautonomia Clinic. Sometimes I forget just how groundbreaking that is.
Doctors, often, it requires one positive experience to heal a multitude of negative. Never underestimate the power you hold.
It is the power to give hope or tear down.
Give those you encounter the benefit of the doubt. Ask questions. Breed hope.