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Trigger warning! -Child abuse discussed, although sensitively and not in great detail. If you think this may be a difficult article for you to read, you may want to read it during an appointment with your therapist. If you choose to read it alone, do it at a time you are feeling less vulnerable and create a soothing environment- snuggly blankets or pillows, a warm drink, perhaps soft music or a relaxing diffused essential oil.
Way back in 2000 when my neurological problems began, I was shocked when the horrible, exhausting, uncontrollable seizures I was experiencing were written off as a psychological problem. The first time a neurologist tried to explain the diagnosis, he was kind, but his words didn’t make sense to me and I couldn’t overcome the thoughts in my head of “They think I’m making this up! They don’t believe me! What am I going to do? How am I supposed to convince them that this is real?”. Later that night in the hospital when I was having a prolonged seizure, a nurse trying to administer medication through my IV screamed at me, “Just stop it! How are we supposed to help you if you won’t stop shaking?”. I felt devastated. Here I was, going through the worst health crisis I had ever faced, and the medical professionals that I had trusted to help me were accusing me of faking my symptoms! At that point in my life, I was honest to a fault, and to be accused of making up something so horrifying felt like a slap in the face on top of the terror I was experiencing from the seizures.
When my kids were young, one of our favorite books was Alexander and the Terrible, Horrible, No Good, Very Bad Day by Judith Viorst. In this book, a little boy named Alexander goes through a day where everything seems to go wrong, from no prize in his breakfast cereal to a cavity at the dentist. His brothers seem to have all of the good luck; Alexander just wants to run away to Australia. At the end of the day, his mother reminds him that some days are just like that, even in Australia.
I’m a person who really likes to understand things. It’s why I majored in science in college. If you don’t have a good explanation for what you are saying, I probably won’t believe you. I’m a hard core skeptic.
Enter Functional Neurological Disorder. It does not make sense to me at all. How can my body just quit working correctly for no good reason?
With most illnesses, we don’t have much of a problem believing the diagnosis we are given. Say you have a sore throat and a fever. You go to the doctor, where you are examined and given a throat culture. The doctor tells you that the rapid test for strep is positive, writes a prescription for antibiotics, tells you what to do to get better, what to expect, and when to call if things are not improving. What you are told fits with what you are experiencing.
Now let’s compare that to what happens to a patient with Functional Neurological Disorder. To start with, most of us have never heard of this disorder so we aren’t expecting to hear that diagnosis. We expect to be given a diagnosis that we have at least heard about.
Does the word “psychological” make you angry and frustrated? So many people I have met with FND are very put off by any suggestion of a psychological component to this disorder. I’d like to try to change some of the thinking behind that reaction.
Psychology is nothing more than the study of the mind and behavior. If you are a living, breathing human, you are affected by the things that psychologists study. Psychological does not equal crazy, mad, or fake. It does not mean that you are making anything up.
We all talk to ourselves, but we aren’t always aware of it. It can be really helpful to become more aware of the things that we say to ourselves and change our self-talk to words that are more affirming, confidence-building, and reassuring. If you have Functional Neurological Disorder, it’s especially important to be aware of what you are thinking and telling yourself.
One day this week, I noticed that my legs were feeling weak. Now, it’s important to pay attention to what we are feeling in our bodies, but what we say to ourselves about what we are feeling is critical.
Have you ever been stuck in a traffic jam? Frustrating, isn’t it? You know where you want to go, but the road in front of you won’t let you get there. Sometimes that’s how my brain feels with FND. The harder I try to go the direct route, the more my body shuts down.