Who Benefits From My Suffering?

(Editor’s Note: This coming May will mark the one-year anniversary of Canada’s opioid prescribing guidelines, which discourage the use of opioid medication in treating non-cancer pain. Canada’s guidelines are very similar to the 2016 CDC guidelines in the United States and are having a similar impact on pain patients. Critics say the Canadian guidelines have created “a climate of fear” among patients and doctors, and may have contributed to several deaths.

Elizabeth Matlack is a 36-year old Canadian and cancer survivor who has lived with chronic pain literally her entire life. She recently wrote this open letter to Health Canada and Prime Minister Justin Trudeau.)  

By Elizabeth Matlack, Guest Columnist

June 15, 1981 was the day I was born. I cried a lot as a baby, but nobody knew why. 

Three years later, when I was old enough to talk and voice my problems, I told everyone that I couldn't sit down because it hurt too bad.  My mother knew something was wrong, but she just didn’t know what.  She took me to many doctors, only to be told that I was constipated and that laxatives would solve the problem. They didn’t.

Bless my mother’s heart, because she did not give up.  She continued taking me to doctors until a pediatrician had the good sense to do an x-ray and found a grapefruit-sized malignant tumor attached to my coccyx and spreading up my spine.  I was given a 10% chance of survival while they operated and removed the tumor. 

They would go on to remove my coccyx, and gave me over a year of chemotherapy and 28 days of cobalt radiation to what was left of my spine.   The damage done to my backside was permanent. The radiation destroyed every single fat cell, causing me to have a cavity where most have buttocks. 

Sitting is very painful for me. The best way to describe how it feels is to imagine yourself resting your elbow on a hard surface, allowing all of your weight to fall on that elbow. That is what it feels like to sit. I cannot sit or lay on any surface that is not completely cushioned.

Not only was the physical pain excruciating, there was the emotional pain of not having a butt, not being able to find any clothes that fit, and being called "No Bum Beth" in school.   

Sitting has always been the most painful thing for me, followed by  standing and walking.  The severe pain in my backside, down my right leg and up through my back is non-stop.  Every hour of every single day I am in pain so severe that it makes the most basic life functions difficult. 

 ELIZABETH MATLACK

ELIZABETH MATLACK

Those are the reasons that I have been in pain management for over a decade.  I have been able to create a somewhat normal life for myself using opioid pain medication. OxyContin and morphine have given me the ability to do what I love most in the world, which is.to make art and walk my dog. The chemo and radiation robbed me of my ability to have children, but they did not steal my inspiration and artistic abilities.  

I have followed all of the rules set forth by my pain doctors, keeping my meds locked up, never sharing with anyone, never asking another doctor for drugs, and passing urine drug tests each month. But none of that matters now.  

The new guidelines set out by Health Canada have caused doctors to no longer treat patients based on their individual needs, but rather as a number based on the guidelines. For 5 years I was on the same dose of OxyContin and morphine. The regimen worked well for me and afforded me the ability to create all kinds of artwork. For the most part, I had a pretty decent and comfortable life -- until the guidelines came out.

In less than 6 months, I was tapered down to less than a third of the opioid dose that I was stable on for five years. The tapering was very fast and caused immense daily suffering on my part.  I do not remember the last time I have slept more than an hour at a time.  I do not have enough pain meds to get thru 24 hours of the day no matter how I work it. Every single day is a roller coaster of severe pain and withdrawal. 

My pain specialist no longer has the ability to treat me properly and I am routinely left without any pain medication, while my GP doctor tries to treat my very high blood pressure. When my pain was being managed, my blood pressure was fine.

I know life isn't easy and I definitely know it can be unfair.  But this sort of cruel and unusual torture that I am being put through is absolutely disgusting. I keep hearing about the "opioid crisis," but the only crisis I can see is all the legitimate pain patients going untreated and suffering, because legislators have their thumb on the doctors and doctors have too much at stake to risk treating patients properly. 

Health Canada says the opioid guidelines are voluntary and were never meant for pain management doctors, but rather for general practitioners and surgeons treating acute short-term pain.  Yet the pain clinics are being raided and told to enforce the guidelines no matter who the patient is and what is wrong with them.  I do not know how much longer my body can continue in this much pain.

I want to make sure that the truth gets out there. There are far too many people suffering and being denied proper medical care. And for what? Who wins? Who is benefiting from all of my suffering?  Who?

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Elizabeth Matlack is an artist and illustrator in Ontario, where she is best known by her artist pen name, Lizzy Love.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.