Event zero


When I was 13 years old, my friends and I worked in an attraction haunted house.  I spent a lot of time running through the dark, foggy halls of an abandoned war fort, in costume, scaring people.  Eventually I slipped and hurt myself.  It felt like I had twisted something out of place in my right leg.  I didn’t know it then, but this was the beginning of an era that would consume a significant portion of my life.
I saw my PCP, then an orthopedist.  They both assumed the ileotibial band that sat atop my hip was weakened and that this had been injured in the fall.  I received some steroid and anesthetic injections into the muscle and was sent on my way. 
Over the following months, it became harder for me to walk.  I felt pins and needles in my legs, and the muscles felt tired and weak.  My doctors were unimpressed.  They gave me crutches and told me there was nothing seriously wrong.  This continued for six months until I sat down in school one day and was unable to stand up.  I could no longer feel my legs.
I was seen at the local, very famous pediatric facility.  No one knew what was wrong with me.  They didn’t order any tests.  The doctor pulled my mother aside and told her that they were holding a bed for me in the psychiatric unit.  Because I had conversion disorder, and was faking. 
I spent the next few days taking very high dose anti-inflammatories and laying around at home, unable to go anywhere.  After five days of this, I woke up in the middle of the night and got up to go to the bathroom.  I was halfway down the stairs when I realized I was walking.  The following Tuesday morning, I had an appointment with another orthopedist, who ordered an MRI. 
In my fall the previous October, I had fractured my L3 and L4 vertebrae.  The bones had crunched against each other and the resulting fragments had attracted fluid, which pressed on my spinal cord, functionally paralyzing me.  The high dose anti-inflammatories had alleviated some of the pressure of this fluid, restoring conduction and my ability to feel and use my legs. 
All of this makes perfect, medical sense when you have the whole story.  The fact that there is an explanation should make me feel validated.  It doesn’t.  No matter how hard I reassure myself that I will never again be a 14 year old with temporary paralysis, I cannot remember these things without fresh fear that I will be committed and shame that the doctors thought I was lying. 
This was my event zero.  Every person with a long term relationship with the medical establishment has one.  It is the first time that a medical professional wronged you in a serious way.  For me, it was the first time I was accused of lying about my health.  I will never forget it. 
Most people with rare diseases are accused of lying for years before they are diagnosed.  It is easier to accuse someone of faking than to acknowledge that you don’t know what is wrong with them.  I was accused of looking for attention, trying to make myself more interesting, both by medical professionals and people in my life.  I was accused of literally making myself sick, poisoning myself to skew my blood work.  I have been called a compulsive liar and a drug addict.  I have left appointments countless times crying and without the help I needed.  I have been literally shamed by doctors for faking while sick with a rare disease.
You don’t live with that for years and emerge without scars.  Every time I have an appointment, I go in with a secret. 
My secret is that I’m not a liar but I think that you think I am. 
My secret is that I will never not think that you think I am lying, because your profession has taught me that I am not worthy of your trust. 
My secret is that even if I trust you rationally, I still think you might tell me I am faking. 
My secret is that because of this, even though I have dozens of tests confirming my diagnosis, I sometimes wonder if it is all in my head.  But if I say this out loud, other people will believe it, too.
When you live in a chronically ill body, there is no mistaking that you are sick.  It is as plain to you as the color of your eyes.  Let’s say you have blue eyes.  Let’s say we live in a world where in order to get a driver’s license, you need someone to confirm the color of your eyes.  Let’s say you ask every doctor you see for several years what color your eyes are.  Some tell you brown, some tell you green, some say they might be blue in a certain light.  Some say you have no eyes at all.  Some say your eyes aren’t worthy of a color. Some say they don’t have time to tell you what color your eyes are.  But you know your eyes are blue, all the time, every day.  You know because you see them.  You know because they are your eyes.
But it doesn’t matter, because what you see doesn’t matter.  It only matters if they see it, too. 
This is called gaslighting, when people deny obvious things.  It makes you feel crazy. 
Our secret is that those of us with rare diseases are repeatedly traumatized in our pursuit of answers.  It is a trauma that is never treated and never acknowledged. 
Our secret is that many of us have PTSD from invasive procedures, from emergencies, from near death experiences.
Our secret is that we have been mentally abused, but everyone believes the perpetrators instead of us.
Our secret is that even if we know we aren’t, even if we have definitive proof of our illnesses, in the very bottom part of our souls, we feel like liars. 
You can never unfeel these things.  You can live around them, but they are always there.  They will always be part of us and how we see ourselves.  We can only ever be so empowered in getting treatment for our diseases.  We can only hide these fears so well.
There is a psychological burden that comes with being chronically ill.  It can be as crippling as our physical symptoms, and this part of it is created by the medical establishment. 



6 Responses

  1. Faith Holland October 8, 2014 / 11:29 am

    This is how the ER treated my daughter at the first visit for the seizures… They treated her like she was faking and like she must have been on drugs (even after blood urine and hair confirmed she has NEVER done drugs). She hates doctors now because of it. I allowed her to read this I hope you don’t mind. And her words were, “I have never been able to say what that first seizure did to my head, but this lady just said it for me”. Thanks for posting this!

  2. Pam H. October 8, 2014 / 12:33 pm

    Hitting the nail on the head here. So sad we have to put up with so much from day to day and then get it from the ones who are supposed to help us. Sadly my friends were on this list as well. Like an emotional bomb went off. Hard stuff to get past, but we do because that is our only option. I am thankful for a great specialist that gets it. Having one person on your team makes all the difference!

  3. Elizabeth Margaret Holbrook October 8, 2014 / 6:13 pm

    Spot on! never have words been so true esp surrounding conversion disorder being there myself as a 21 yr old!

  4. sandy October 8, 2014 / 11:55 pm

    I hate that we share this secret….

  5. Traci October 9, 2014 / 12:00 am

    I love you for writing this. Now that I know that you have experienced this trauma and are still such a strong & positive fighter & educator, I admire you even more.

  6. LGT October 10, 2014 / 9:43 am

    Great post! I like your point that the disempowerment from this experience can impact people’s ability to seek treatment for themselves.
    So true about the gaslighting!
    I’m working on a book about internalized discrimination patients face from these experiences and how we need to throw it off in order to act in an empowered way (for obtaining treatment as well as advocating for ourselves and even things like getting disability accommodations in order to participate more fully in the world).

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