Just this morning I was described as an annoyingly independent and stubborn oddball.
I can live with that; I presume more people would agree.
What they do not know, however, is that for the better part of 13 months, I chose to hide a painful side of my emotional and mental frame of mind. In fact, I simply refused to give meaning to it.
Hints were dropped here and there, but I never told anyone about the fear that gripped my throat every time excruciating, knifelike facial pain (trigeminal neuralgia) took hold.
When TN attacks, the area around my left eye and the inside of my left ear as well as the inside of my eye become target practice for lightning bolts looking for a different kind of light show. Or, the stabbing pain turns into rubbery, burning numbness.
Neither are favourable.
Every 5 seconds piercing pain would turn my lively chatter into silence, and fear would grow stronger as time went on because people began to notice my absence because I needed a quick withdrawal from the outside world.
Anxiety grew to the point where I would only go outdoors wearing earplugs and sunglasses, and when I had a few Kalms tablets under my skin. Also, as a psychological issue, the stigma surrounding mental health made it difficult for me to speak up. In addition, I was also clueless about the fact that MS and anxiety are linked, making it a mental health issue about a chronic, physical illness.
I was more than surprised, so, when I read that research showed that MS-related anxiety usually happens shortly after being diagnosed, while some doubt it does not result from the physical process of MS itself.
Whoa! Not so fast, buster!
I begged to differ.
MS had already been my associate for seven years when trigeminal neuralgia returned after a four years absence. Just like TN, it seemed that anxiety found a similarly brutal way to tease its subject. And just like facial pain, it proved to be one tough cookie.
Sadly, I had to cancel family plans once too often because of the unpredictability of MS and the agonising, hurtful arrival of facial pain just a few hours before I was due to attend an event.
Despite explaining once again how, why and when, to add injury to insult, foul remarks were hurled at me about how badly I handled my illness. Apparently, the person in question knew how to manage my disease much better even when she did not have MS, and when I was the only one with MS in her own social circle. The cherry on the cake? I had already been living with MS for 8 years and knew full well how to handle it (Don’t you just hate it when that happens?)
I understand it’s hard for people to relate to you when they have never felt shooting eye or ear pain every few seconds. It also sounds insane to hear that vibrations caused by walking, bright lights, loud noise or a whiff of cold air can cause sudden, intense facial pain. Eating, laughing, talking, brushing my teeth, likewise. TN seems like such an easy excuse when its symptoms are anything but.
Since those hurtful remarks, however, a tiny fear-induced seed started to grow in my mind each time trigeminal neuralgia attacks happen.
But, TN was not an excuse.
It is still not an excuse.
This is MS.
This is not kindergarten.
MS has been part of my life since 2005. I’ve had ample time so to learn how not to show weakness in public. You can call it pride. You can call it vanity. You can call it stupidity. I simply don’t want others to see how it impacts me. I stopped yelping. I turn around. I pick up my phone. I pretend there is still coffee in my cup. I stop talking. I am there, yet so far away.
Result? More stress caused by compounded anxiety and TN/MS symptoms.
When I am at home, I can live with the consequences because I am in a safe setting where I can go to bed and try to chemically wear off the symptoms. It is also where I cannot be criticised or made to feel guilty because my illness doesn’t fit in someone’s daily schedule.
When my mum is around, I yelp. I face her. I leave the phone/laptop/tablet where it is.
How did I ever let anxiety take over, and how did I get over it?
fight or flight response made me freeze, my mind and heart started racing, and I felt restless and nauseous as if I needed to get the hell out of Dodge.
Nice was different.
Organic changes in the brain may result in anxiety, and while I dealt with MS on a physical and physiological level, I learned how to address anxiety on an emotional level. Being retired, I spent as much time as I pleased on improving each. The temporary threat to my persona was reduced to nothing by studying, reading, watching TV or meditating – as long as I could focus my attention elsewhere.
It now sounds so simple, because it was that simple.
By identifying and talking about my fear of being called names again because of being ill, I had to accept the fact that for some people, it’s dreadfully easy to break down others to hide their own mistakes. This ugly character trait was and still is their problem, and not mine.
My issue – my physical and mental response to that ugly feature, meant that I had to adjust my way of thinking to stop feeling overwhelmed each time TN happened in a public setting.
Anxiety taught me that fighting to keep toxic people in my life was just that: a fight. There simply comes a time in your life where you need to let go of people you have crossed oceans for, while they didn’t want to jump puddles for you.
My CBT (Cognitive Behavioural Therapy) course helped to shift my attention because CBT’s premise is that what we can learn, we can unlearn. With some luck, such uneasiness will become a non-subject, altogether.
The beauty of the mind is this: it uses itself to repair itself. And that includes my anxiety.
To know what your apprehension means and how you can control it, take this free 7-minute anxiety test
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2017. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.