To the Doctor Who Thought Negative Test Results Meant My Pain Was 'in My Head'

Those of us who have a chronic illness or have someone close to us who does have most likely heard doctors make insensitive comments. Since I have been living with one since birth, I have had my fair share of insensitive comments from different doctors over the years, but the one that stood out the most and really affected me emotionally was when a doctor told me I had a conversion disorder and my pain was all in my head. Until I was psychiatrically stable, I wouldn’t be physically stable.


The condition I have is called hydrocephalus, which is a disease in which, for whatever reason, a person’s CSF (cerebral spinal fluid) doesn’t drain on its own and requires some type of surgical intervention. In my case it was caused by severe scaring on my ventricles caused by a parasite I contracted in utero. I had my first shunt placed when I was 10 weeks old and have had a total of 17 surgeries over the course of my life.

Since I have had so many surgeries, my ventricles no longer change in size. So even if my shunt is not working properly, they have to do other kinds of tests to figure out the exact problem. In this case, they surgically placed an intracranial pressure monitor in my head to see what my pressures were over a 48-hour period. If there was anything abnormal, they would do a revision of some kind.

After the 48 hours it was determined I was severely over-draining and needed a new type of shunt placed. Even though the neurosurgeon shared this information with the headache specialist, they still wouldn’t budge on the conversion disorder. Which is why I found this particular situation more hurtful than some of the others.

For those who don’t know what a conversion disorder is, it is when a person has neurological symptoms but all the tests come back negative and there is no apparent physical cause, so the symptoms are attributed to mental factors. Some mental health professionals consider it a diagnosis of the desperate – meaning if they can’t find a physical cause, they label it as psychiatric.

When this doctor told me this, I was livid, because there actually is a physical cause for my chronic headaches but they refused to see it as such. I found this particularly hurtful because they were completely disregarding my experience. I chose to share this story because I want to spread awareness for proper bedside manner.

Good bedside manner should be a main priority for any kind of health care professional working with patients. Compassion is key when you are treating someone. It’s key that you see the patient as a whole person, not just their disease. I feel this is important, especially when dealing with someone with a chronic illness. Chronic illness can be both physically and mentally draining. Having a compassionate doctor can make all the difference when dealing with tough situations. It has always baffled me when a doctor has made hurtful comments because I used to think if they are in a helping profession they would understand that the patient is a person, not just a disease or symptom. What was particularly hurtful
about this was the doctor didn’t want to hear what I was trying to express.

Just because you can’t see it doesn’t mean it isn’t real. In my case, there really is a medical cause, but over the years my tests always come back normal. If there is anything that people should take from this, it’s that compassion and empathy are so important. All doctors and other medical professionals should take this into consideration so they can maintain a good relationship with their patient.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Wavebreakmedia.

Find this story helpful? Share it with someone you care about.

Related to Hydrocephalus

Mom holding baby son while standing in kitchen near sink

A Letter of Love to My Son With Hydrocephalus

My Sweet Davey, At the time I’m writing this letter you are 2 years old. You have endured more in your 2 years than what seems most people do in a lifetime. You have survived seven brain surgeries and a horrible infection called bacterial meningitis. Davey, you are my hero and don’t you ever forget [...]

What I Wish I Could’ve Told My Parents When I Was Diagnosed With Hydrocephalus

I was born with congenital hydrocephalus, and had a shunt put in when I was less than 2 months old. I grew up with this condition being hidden from me, only uncovering parts of the puzzle over time as I grew up. At the point of diagnosis and intervention, I could not have spoken up [...]
Close-up of two businesswoman around the table during job interview

Why I Declared My Hydrocephalus at a Job Interview

I recently applied for a teaching aide position at a school for special education. The process was relatively smooth-sailing, since I had a friend who was working there – not only was she my character reference but also my middleman in making enquiries about the school, job scope and application process. The decision to enter [...]
The author and her Mom.

6 Things I Wish I Could Have Told My Mom the Day I Was Born With Hydrocephalus and Goldenhar Syndrome

Monday, April 2, 1973 Dear Mom, It’s only been a few hours after my birth. I know you are tired in a wakeful sort of way after over 12 hours of labor. The doctors “didn’t know” my skull would be so swollen with fluid because of hydrocephalus. You knew from your mother’s instinct listening to [...]