Chronic pain · Fibromyalgia

Doctor’s need to start listening to our children

Knee tape

Multi-tasking 14 year old. Trying to fish, look cool in my Mighty Ducks cap AND keep my kneecaps taped in place all at the same time.

Last weekend I came across the story of 17 year old Canadian, Ophelia Brown. Ophelia has complex regional pain syndrome (CRPS) and is awaiting admission to Ottawa Hospital’s pain clinic.

Ophelia’s story touched me for a number of reasons, not least of all because I remember what it was like to be a young child, and later teenager, in pain.  Ophelia’s pain started at the age of 9 however, it would take 5 years for doctors to correctly  diagnose her CRPS.  And still, she awaits acceptance into a program that could help her manage her condition.

As an accident prone child, pain was always a part of life.  From bruise covered legs, scraped knees, torn ankle ligaments and sprained wrists; you name it, I’d done it.  My parents’ bathroom cabinet was over flowing with different types of bandages, slings, sports tape, splints (both store bought and home made).  I’m sure they wished the doctor’s surgery had a frequent flyer program for hiring crutches.  By the time they gave in and bought a pair when I was 16 the entire family could have traveled the world first class.

It was at the age of 10 however, that pain would become a permanent, chronic, fixture in my life.  Don’t get me wrong, I was still in for my fair share of acute pain incidents but it was when my jaw decided to pack it in at the age of 10 that I would first be introduced to the world of chronic pain.  Not that anybody used those words “chronic pain” of course.  It wouldn’t be for another 21 years that doctors would use that term to describe my condition and finally explain to me the difference in managing acute and chronic pain.

Why did it take so long to find help?  Why did my body need to go through so much before answers were forthcoming?  Why did I need to endure so much pain?  I have asked myself these questions so many times and, the majority of those times I have avoided answering them for fear that I, myself, contributed to the problem.  Was I not pushy enough with my doctors?  Did I not explain myself and my condition appropriately?  Did I give up on the medical profession too easily?

I don’t have the answers to those questions and, realistically, they don’t matter.  That is in the past.  I now have a diagnoses, a treatment plan and an amazing group of medical professionals that I can call on when needed.  One thing I do know however, and one thing that concerns me for those who come after me, is that my age definitely had a role to play in my 21 year wait.

Being only a child when pain became a chronic part of my life meant that I was unable to advocate for myself.   The one thing I had going for me were my parents.  In particular, my mum who was right by my side every step of the way, at every appointment, fighting for my voice to be heard.  Unfortunately, when a mother speaks up all so many health professionals hear are the words of an overly concerned mother hen.  They aren’t listening to a patient’s story, they are hearing an exaggerated version of events.  Or so they believe.

Was age a factor in the 5 year delay to diagnose Ophelia’s CRPS?  That, I don’t know.  What I do know is that we need to start listening to our children.  No actually, doctors need to start listening to our children and to their parents.  As an adult, my fiancé is by my side and has a pretty good idea what I go through on a daily basis.  But still, as an adult, I don’t dwell on my symptoms (generally), I don’t explain how and what I am feeling 24/7.  I just get on with it.

It’s because of this that my fiancé can’t understand as fully as the parents of a child in pain.  Children, especially children who don’t understand what is happening to their bodies, speak up.  They complain, they try desperately to explain what is happening because, maybe just maybe, if I tell her what is wrong, she will be able to fix it.  Maybe, just maybe, if she understands the pain I am in, she will be able to take it away.

This is why doctors need to start listening to our children and to their parents, their greatest advocates.

Children can, and do, suffer from pain.  Real pain that needs real answers.  Real treatment.  Like the treatment Ophelia could receive at Ottawa Hospital’s pain clinic.  Here’s hoping she does, soon.

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