About five years ago, a couple months after the birth of our daughter, my husband and I found ourselves in the office of a chronic pain specialist. We were so excited and very nervous. My husband had been waiting to get into this clinic that specialized in pain for 18 months. They had neurologists, physio, massage therapy, therapists, and a pharmacy all under the same roof to coordinate treatment. It sounded perfect. But the gatekeeper to this medical Shangri-La was a Chronic Pain Specialist who believed that opioids were not effective to treat intractable pain and that all people should be on the same psych medication. So, as we sat there with our 8lb baby in my arms, this doctor told us that to be treated at all, my husband must come off the codeine he had been taking for 15 years and he must change his psych drugs to what this doctor felt was best after just meeting us. This was the hitch. You see, my husband’s case is complex because his chronic pain condition is resultant of a traumatic brain injury. So even if he did not have chronic pain, he would still take psych drugs that it took us years to find a balance for and stabilize. What this doctor was asking was potentially catastrophic to our lives. It was arrogant. And while we knew this and tried to explain why we weren’t really in favour of it, he told us in no uncertain terms that we either got with the program or else the Chronic Pain Centre was not available to us. So we talked. We decided we should try his way because our aim was Moving Towards Better and we did not know for sure that it wouldn’t work.
We Were Not Being Our Own Advocates
Our decision to go along with this doctor’s plan nearly cost us our marriage. I will admit, it was at a weak point. We were new parents, having just weathered the emotional storms of infertility, miscarriages, hormone treatments, and a high-risk pregnancy. We did not realize how quickly my husband’s mental state could deteriorate and how now, my eyes firmly on my baby, how I did not notice until it was too late. My post-partum self, wanting only peace and snuggles, was full of rage that my husband would choose now to go off the rails. We had never told anyone how hard this was. Choosing at the time to feel shame instead of admitting that it was not anyone’s fault and seeking help.
We had been together 15 years. In the early days we battled doctors and each other to fight for the peaceful, calm life we knew we deserved. But now, I was older, I had less patience for him and the unpredictability. I had a child now, I needed to focus on her.
Taking Back Our Choices
Thankfully after 6 month, 6 months of telling this doctor that the plan was not working, that our lives were going downhill, that the behaviour my husband was displaying was not right, we gathered up our strength and quit his program. We went back to our GP to manage the opioids and found a wonderfully dry, quietly caring psychiatrist who put my husband’s meds back on track. It took years to mend the emotional scars. We had said and felt horrible things. Thankfully we put things back together for her. It breaks my heart to think about the time we lost as a new family while we were doing what we thought would make us better.
We enjoyed three years of stability and peace after that adventure. He was still in pain, but we went back to our routine of management and family joy. In 2018, the specter of the international opioid crisis became a real factor as the Alberta government put increasing pressure on doctors and pharmacists who continued to manage their patient’s pain with opioids. Our doctor informed us that my husband’s current regime was not a long-term solution and told us we would have to see a chronic pain doctor about getting him off them.
Sometimes You Have to Make Decisions
This time, there was less of a decision to move towards better as there was an acknowledgement of the writing on the wall. We knew we did not have a choice and we wanted to be as cooperative as possible. The first place we were referred to was a drug addiction counselling drop in centre in the downtown East side of Calgary. I called our GPs office and let them know that this was not what we had agreed to and that we were not going there. I was to learn that our government and Alberta Health Services were woefully under-resourced when it came to the handling of Chronic Pain patients. The medical community is divided on the effectiveness of chronic pain medications and since what works for one does not work for all, there is no consensus and therefore, no plan. Darren was sent to another addictions clinic that deals with chronic pain patients ad-hoc. The staff are amazing, and they have really tried. Our doctor has actually listened, and we truly believe he has our best interest at heart.
But over the last year, they have taken my husband from functioning to non-functioning. He went from working to on medical leave. Some days I must dress him and most days I must manage his medications which is a full-time job because they have been changed so many times. Some up, some down, some gone, some added, some replaced, some reviled, and then some returned. In February, when we finally had enough, we asked to be sent back to the same Dr. who had helped us back in 2014 to get back to normal. After talking to him for an hour, his question was, “why are they trying to fix what wasn’t broken?”. So now we attempt to put our lives back on track again.
Treating Chronic Pain = Treating Our Family
And this is how treating chronic pain interferes with the process of moving towards better. We have asked every health care provider we deal with if we can just be left to live our lives. My husband is a complex case, but he is not unique. There are thousands of people who are trying their best to Move Towards Better. But instead of helping to usher in the stability and peace that these people need, the government, Drs, insurance companies, and even the general public think that they know better. They want to tinker and change and believe they know best about treatments. Just because yoga or meditation, or physio, or cbd oil, or acupuncture, or gabapentin worked well for one patient, it may not work for all.
I do support the idea of a holistic approach, I do believe that a combination of traditional and alternative therapies can be useful to all. But our approach must be delicate and patient-led. Treating chronic pain patients like drug seeking addicts is rude, counter to medical studies, and ultimately a waste of everyone’s time. It creates a divide of mistrust between patients and the medical community. No one knows more about their conditions than the warriors and their supporters. Believe that a single treatment approach, or that all patients are addicts, or that people’s lives are an arena for experiment is harmful and leads to the spike in suicides we are seeing in the U.S. We cannot allow the treatment of chronic pain ruin the lives of the people and the families living with chronic pain