No Retreat: Learning to Manage My Medical Phobias
On March 4, 1933, U.S. President Franklin Delano Roosevelt told a fearful nation that “the only thing we have to fear is fear itself — nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.”
Roosevelt’s words didn’t immediately end the financial chaos in the U.S. at the time, but they gave listeners a sense that things would eventually return to normal. He assured the public that everything would be OK.
Since my myasthenia gravis (MG) diagnosis in June 2020, I’ve had to confront my fears. I don’t claim to be a latter-day FDR, but I have learned valuable lessons about fear.
Fear is often viewed as childish. We understand the irrational nature of fear, yet it still has power. It can paralyze.
For reasons as yet unraveled, I have trypanophobia, or a fear of needles, and claustrophobia. When the phlebotomist draws my blood, I can’t watch, occupying my mind with other thoughts. I cannot be present in the moment. Claustrophobia makes flying impossible without medication. No escape rooms for me.
These two phobias joined forces last year, when my neurologist scheduled my first MRI. How could I get through a procedure that required intravenous dye and enclosure in a tiny space? I knew these phobias were “unreasoning, unjustified terror.” I also knew I wanted to fight MG with all my power, and the MRI was essential. I rightly suspected that this would be the first of many MRIs.
Whenever I shared the emotions this procedure stirred, well-meaning people would counsel that “it’s no big deal.” As a psychology teacher, I know that telling an individual that a phobia is “no big deal” is not a healthy approach. The physical and emotional reactions brought on by phobias are as real as gravity. Dismissing them can compound the problem.
The best advice I received came from my sister, who is one of those odd people who enjoys and explores the human body with an interest and curiosity I lack. This is a woman who had both hips replaced in one surgery. And prior to the surgery, she watched with pleasure some YouTube videos of the procedure.
“I think of how this is going to get me to a place where the pain will be gone,” was her advice.
On MRI day, my friend Ned accompanied me to Texas Neurology in Dallas. The technician assured me it “won’t be as bad as you imagine.”
“For your sake, and that of all those in this building, I certainly hope not,” I replied.
I didn’t share with her that if things worked out as I had imagined, either the paramedics or the police would need to head up U.S. Highway 75 in search of a runaway patient.
I sucked it up and took the Valium my neurologist prescribed. I pretended to be elsewhere while the IV was inserted. When the technician informed me that my head would not be inside the machine, I heaved a huge sigh. I knew I would make it through this one!
My claustrophobia and trypanophobia didn’t disappear. Hospitalized with a myasthenic crisis late last December, daily blood tests were coupled with a port that allowed for plasmapheresis, a plasma-substitution procedure. Daily abdominal injections of blood thinners also were necessary.
Needles! Needles! Needles!
More MRIs were followed by intravenous immunoglobulin (IVIG) treatment.
As I traveled this path, my mantra became: “This is going to get me to a place where my pain will be better.” Slowly, the fear lessened. While it never completely vanished, something in me grew stronger.
At some point during that December hospitalization, it crystallized: For 18 months, MG had controlled me, and the result was fear and anxiety. These hindered my ability to respond in a healthy manner to life’s challenges. I decided instead that I would control MG.
Needles will never be fun, and enclosed spaces will always present challenges. But I had additional opportunities to work on them.
High doses of the synthetic hormone prednisone that I had been taking resulted in avascular necrosis, or bone tissue death, in my left hip. The pain became intense and constant. But hip surgery initially scheduled for mid-May was postponed because oral surgery and IVIG treatments precluded it. These procedures provided new opportunities to confront my fears.
My hip surgery is now scheduled for late July. I know that this will get me to a place where my pain will be better. MG has forced me to confront some of my demons. Have they vanished forever? Not yet. But their power has weakened.
Next time your fears show up, borrow my mantra. You’ll get through whatever life throws your way. Pay it forward. When someone needs a “bucking up,” tell them, “Repeat after me: This is going to get me to a place where my pain will be better.”
Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.