Developing fibromyalgia as a child

“Over-controlled by anxious, fearful parents, these children often become anxious and fearful themselves”, Susan Forward

Recently a commentator on one of the blogs wanted more of my personal information. She said that I was prone to write about others rather than myself. This, of course is true, although I have leaked a few lived experiences of my own over the course of writing these fibromyalgia blogs for many years. First, I want to point out that fibromyalgia and chronic fatigue are caused by trauma that needs to be addressed early in life and only talk therapy will begin to help our suffering. This is why I am sharing my own childhood experiences that have set me up for anxiety, panic attacks and night terrors.

I do believe fibromyalgia is a journey that begins in childhood or perhaps even in the womb. It isn’t an easy thing for me to do, being ‘out there’. I do not see myself as a victim and life could have been much more difficult, as it is for many. That my parents loved me I have no doubt. Their life circumstances were not easy either. This is not a story of parent blaming.

All of us who have fibromyalgia are highly sensitive people, perhaps born that way. This is how I became or was born as highly sensitive. We each have our own story. This is how it began for me.

The Story

I was born to parents who were barely 20 years old, both high school graduates, but living in an era when becoming pregnant outside of marriage was a disgrace. They lived in a small town in Nova Scotia, Canada,and married in the Catholic Church seven months before I was born. My mother’s family treated her badly because of my ‘early’ arrival, therefore my parents moved from this small town to the big city of Montreal. I was raised in an apartment on what was then considered the longest and busiest street in Canada, Sherbrooke St, 22 miles long. It was a French, Italian, Polish working class neighborhood. It was war time and my father got a job in a munitions factory. We lived in a very small apartment, a large room that opened from a bedroom into a front room with a coal fired stove in the kitchen and a bathroom.

My mother was exceptionally anxious and my father was absent most of the time, an angry man, prone to violent outbursts, who felt forced into marriage. My Mum spent every day drinking coffee, smoking and listening to the radio. She could not speak another language and did not have any friends or relatives in the city. Because we were English speaking we did not fit in the predominately French neighborhood. It was just my mother and me alone every day without any family or other adults with whom to interact. My mother guarded me closely and lived for my company. I was the one who would buy needed groceries as I learned to speak French at an early age.

I found one girlfriend, Lise, who was French and who became my constant companion. I learned to speak French at age three so that we could communicate. My mother could not communicate with Lise’s mother. Being an Anglophone meant we were frequently discriminated against, so I did everything in my power not to be noticed as different. I would change my name to a French one if someone in the neighborhood asked me for it. English speaking people were called “tête carreé” , that is, “square head” as a French-language slur against Anglophones in Quebec. I was terrified that I might be found out and called that name, so I always tried to ‘pass’. Lise helped me in my lonely life. As playmates we were inseparable. Here she is in her first communion outfit. I wish I knew where she is now. We lost contact after moving when I was an adolescents.

LISE BONIN

Home life was primarily my mother and me quietly listening to the radio. Mum was absorbed with me and my safety. I would often cry that I felt all alone but she would not understand what I meant and I didn’t have the language to explain it to her. I began sleep walking and crying with nightmares. It was the beginning of my generalized anxiety, night terrors and sleep disorder. We were robbed twice during those years, once the thieves stole my meager Christmas presents.

Then came the dreaded school experience at age five. Because I was forced to go to an English Catholic school I was separated from my only friend who attended a French Catholic school nearby. I had a long trek to deLorimier St school, either by streetcar and bus or on fine days I walked. I would be the whole day without Lise, our roller skates, balls, our paper dolls, our real dolls and skipping ropes.

My first day of school will always be remembered for the terror I felt seeing nuns for the first time in my sheltered 5 year old life. Up until this time I had not been in a church as my parents did not attend. The photo below is of my first grade teacher, Sister Agnes Alma.

It was an all girls school, as was common in that era, and I wore a uniform with long stockings that were mandatory. We were all crying. My mother left me as did all the other parents. As soon as the door closed we were forced to go down on our knees to learn prayers. We were told that the huge crucifix of the dead man on the cross was killed because of us and the ‘original sin’ we had been born with. We all sobbed, some of us uncontrollably. Each day before classes we knelt to pray, and before and after recess and again before lunch break. The same process was enacted after lunch. Catechism was preached and memorized and we had to kiss the feet of the crucifix with Sister Agnes swiping the feet after each kiss with what I presume was alcohol, after all, it was the polio era. The story of the crucifixion haunted me day and night.

I began hyperventilating, particularly at bedtime and my father, who when once was at home, taught me to breathe in a paper bag which helped calm me somewhat. I was convinced I would die and go to hell. Furthermore, I began to faint often, particularly before going to school in the morning. Anxiety, panic, hyperventilating and fainting, and living with an anxious parent are all precursors to fibromyalgia.

The nuns terrified us all. They would walk around with wooden clappers; avoiding having a finger or ear lobe clasped in a clapper was a strong deterrent to misbehaving. But it was the wrath of God we feared the most and the stories of his death. “Holy cards” were handed out to the deserving children.

Preparing for my first communion meant I had to begin my weekly confession. Finding sins to confess was a difficult task. I learned to say by rote :

“I have sinned exceedingly in thought, word, and deed, through my fault, through my fault, through my most grievous fault”

On each fault I would rap my chest. I had no idea what my sins were but I must have had some? I was almost seven by then living in an almost completely enclosed tiny apartment on a busy street, with a lonely, anxious, terrified mother and with only Lise for comfort. I must have committed sin? My mother frequently told me I must never lie to her or God would hear me. I was very obedient. I had no opportunity or inclination to steal. I didn’t know any cuss or swear words. Who would I kill? I didn’t ‘covet my neighbor’s wife’ (whatever that meant) or ‘bear false witness against my neighbour” (?) and as far as the other commandments I did not understand them anyway. I must have been sin free. Like all of us living with the intense fear of dying (polio was a real fear of us all during the 1940s, and one of my classmates died from it), everyday was a search for the sins we had committed and would confess in the weekly confessional box. There was little joy in life and no grandparents, aunts, uncles, cousins or adult friends to ease the burden.

By now I was exceptionally hypersensitive, living with Catholic guilt. It would take a few more years before a full blown fibromyalgia would develop. The groundwork was laid. Anxiety would become my life long companion; night time would always be feared; guilt would plague me forever; depression would surface easily; sleep disturbances would haunt my lifetime. If only I had been able to talk with a responsible adult. It was an era when there was little understanding of the intensity of a child’s fear. For those of you out there who can afford to spend time with a therapist, run, don’t walk, find someone you can trust. While it won’t cure it is at least a beginning step towards an understanding about how fibromyalgia and its challenges of anxiety and depression along with the physical manifestations first began.

End of Part One

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