Known colloquially as “medical trauma” or “medical PTSD,” trauma from chronic illness, medical procedures, and hospital stays may have long-lasting and devastating effects.
Post-Traumatic Stress Disorder (PTSD) isn't a neurological symptom of multiple sclerosis.
But the link between multiple sclerosis and PTSD, in my case, was one of MS's more devastating symptoms: trigeminal neuralgia (TN). TN causes sharp, electric-like shocks of pain to shoot across my face and jaw. Brushing my teeth, touching my cheek, or even a soft breeze can send waves of agony from my face to my brain.
It's not surprising that frequent, chronic pain is the most reported physical problem among people with PTSD.
How my MS symptoms led to medical PTSD
People with MS have a 20-fold increased chance of developing TN, with the neuropathic pain condition affecting up to 4.9% of MS patients. Unfortunately, TN was my first ever MS symptom. Over five months, it was followed by severe fatigue, eye pain, slurred speech, itchiness, tingling sensations, tremors, and nerve pain in my left leg.
Related: Managing Multiple Long-Term Conditions with MS
Trigeminal neuralgia is rumoured to be the most painful MS symptom. In fact, some doctors say TN is "the most excruciating pain known to humanity".
My TN attacks go on for about two hours, then disappear as suddenly as they arrive. With it, it takes any sense of my physical, mental, and emotional security.
To this day, TN remains one of the most misunderstood symptoms of MS. Who could understand how much something hurts unless they can feel it too?
A tooth extraction turned my life upside down
Then there was the small problem of the dentist. "Tooth extraction" coupled with "TN and MS" sounded like an experience I wanted to bury in the bottom of my sock drawer. As my face pulsed with pain, I imagined hitting the dentist or testing out my entire vocabulary of vulgar words.
Related: What MS Took From Me – and What It Gave Back
The dental surgeon and nurse were warned about my TN and where the pain came from before my extraction. I tried to break the tension by suggesting they knock me out with a rubber mallet.
Although I was half-joking, my request for a total blackout was sincere - though neither took me seriously. I found this odd. Rubber mallet aside, dentists surely knew all about facial nerves, especially those around the mouth and teeth.
I'll be short with what happened next. Instead of being rendered unconscious, I was physically, mentally, and emotionally broken down to a shadow of who I was before the dentist's office.
My whole body was as tense as a rod; my nails dug into the chair. The dentist administered several anaesthetic injections that didn't help me, them, or the tooth.
The pressure of the dentist's hand on my face created wave after wave of the most agonising TN attack I've ever had. He hit the mandibular nerve at the bottom of my cheek. It caused a bolt-like surge of pain to the middle of my chin.
I punched the dentist's hand, cried, and shouted "STOP!" all at the same time.
Until my first TN flare-up, endometriosis had been the worst pain I'd ever felt. I'd had surgery for it just three months before, and I was already facing a new, worse agony.
For 40 minutes, the tears rolled down my face, and I realised I hadn't cried like this for over 10 years - the day I received my MS diagnosis. I couldn't even wipe the tears away, as touching my face would cause another round of piercing pain.
I became terrified of any experience that may trigger facial pain
I was told I'd need to see the dentist for a check-up in a few months. The time came and went. I sat by the phone as it rang; I deleted all reminders from my mobile. All went unanswered and deliberately so.
But every tinny buzz of my ringtone or bleep of a text message would cause a panic attack. The more I psyched myself to reply, the more I thought of that time in the dentist's chair.
I couldn't take it anymore. Despite my fear of medical intervention, I visited my doctor's surgery several times. Eventually, my GP told me, "Willeke, you're experiencing PTSD".
Related: How I Rebuilt My Life with MS
I never wanted to sit in that dentist's chair again or feel that much pain, even if my life depended on it. That's why people with TN and MS are known to skip dental care.
MS and PTSD haunt me together
My PTSD and TN are triggered by loud noises, like traffic, banging doors, and thumping music. I've left friends in the restaurant because of noises that activated my stabbing facial pain. I've walked out of supermarkets and movies I wanted to see. They all trigger a TN flare-up, and then the PTSD starts again.
And these are just auditory triggers. At one concert, the strobe lighting meant I had to be physically lifted away from the stage. I haven't been in a concert hall for a decade.
Multiple Sclerosis, PTSD, and chronic pain have destroyed any sense of security I used to have.
They have caused permanent rifts in my family. I avoid medical attention as much as possible, fearing more medical trauma.
MS, PTSD and TN are my burdens to bear. But I want to feel safe, just for one day.
NPS-IE-NP-00615 October 2022