I wish you knew how scared I was when you came. I didn’t understand why my body was twisting and turning and convulsing, why I couldn’t speak or open my eyes. I was in excruciating pain from spasms that twisted my limbs so far, I thought they would break. It was difficult to breathe when my body twisted around like it did. Most of all, however, I was terrified of what these episodes were doing to my unborn baby.
I didn’t catch on that you thought I was faking until you had me away from the watchful eyes of my family who were desperate for me to get help. I could hear the annoyance in your voice when you got down in my face and demanded that I cooperate and asked why I refused to open my eyes or speak. I wish you understood that I tried; oh how I tried to open my eyes and respond. By then, I wanted nothing more in that moment than to escape. I wish you knew how trapped I felt, locked inside a convulsing body, strapped too tightly to a stretcher, enclosed in an ambulance with the doors slammed shut.
Never had I felt more helpless and alone.
I wish you knew just how shockingly painful that pinch was that someone gave me. I suppose the idea was to see if it would make me snap out of it. Indeed, I wanted to sit up and scream in indignant pain, but instead I was forced to lie there in silent agony, imprisoned inside a body that wouldn’t cooperate.
I wish you could know just how incredibly difficult it was to lie there and hear you give misinformation about me yet again as you handed me over to the care of those in the hospital and left the room. It was so distressing not to be able to speak up and correct it, and no family members were present yet to hear it. I couldn’t tell them what had happened until hours later.
I never saw you again after that (technically, I have never seen you because I couldn’t open my eyes). Your work was done after transporting me to the hospital. But you opened my eyes in an entirely different way. You introduced me to a whole bewildering world of being placed under suspicion by the very people I thought would try to help me.
I was handled roughly, observed closely for signs of faking and tested for drug abuse. They did run a few other tests, in part because my husband insisted, but the overall feeling I was left with was that somehow this was my fault, and that my physical symptoms were deemed as not “real.” At least, they made it very clear I wasn’t having a real seizure. They didn’t give me anything to ease my symptoms or even offer a glass of water once I could swallow again. Instead, I was endlessly questioned by a psychiatrist trying to get me to admit that this all was brought on by some sort of emotional trauma. The truth is, the emotional trauma I experienced was from the way I was treated. I was in shock, in disbelief and feeling helpless.
I wish you knew how long it took me to quit having a feeling of panic whenever I saw an ambulance after that. How after all I went through that day and since, I’ve made my family promise never to call for medical assistance whenever my movement disorder takes over my whole body by storm in that non-seizure way. That I’d rather suffer at home and wait it out than to risk being thought I’m faking and not be helped anyways. How that now, years later, sometimes my symptoms are so severe that I find myself torn between praying that they keep their promise and not call, and hoping they won’t regret it if they wait too late to call.
It is an awful feeling to be more afraid to ask for help than to suffer through such severe symptoms that I wonder if I will make it through.
I wish you knew I wasn’t faking that day, and that I truly needed help. I wish you could have known how this would affect me for years to come.
I want to thank the doctors, nurses and medical staff who have treated me with kindness and compassion over the years. It is people like you who make the trauma of injuries and medical crises a little less scary. And to my friends and family who work in the medical field, I’m so proud of you for choosing that profession and all that you do to help people. I could listen to your stories all day.
But I share my own story to explain why I cringe when I hear tales of patients who are faking, how I wonder if some of them really needed help. How my heart breaks for the patients who share how their suffering was made worse by those who thought they were faking or seeking a drug fix.
I write in hopes that somehow, someone will read my story and remember it the next time they wonder if their patient is faking or not.
Editor’s note: This is based on one person’s experience and should not be taken as medical advice. Please consult a doctor with any questions or concerns.
The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.
Lead photo source: Thinkstock Images
As a wife and mother of four beautiful children, Holly also knows the struggles of day-to-day living with chronic illness. As her movement disorder has progressed and her disability has increased, she’s finding it more and more important to find joy in the little things. Writing is her passion, first to express what is on her heart, but also to encourage others who are in pain and spread awareness of what it’s really like to live with a movement disorder, disability and chronic illness.
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