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A Patient’s Journey with Pain – Finding HELP AB

By Agatha Grochowski

Tracy Fossum has been in a long-term relationship with chronic pain for as long as she can remember. Through the years, Tracy’s pain became harder to manage. “I felt very unstable. I didn’t know what it meant and where it was going… I didn’t understand what was happening to me.”

Even with increasing pain, Tracy pressed on; going to college, having babies, and getting married. Fresh out of college, she had multiple job offers and even had the opportunity to study internationally. Unfortunately, her worsening chronic pain had other plans for her. “All of a sudden, I went from this place about to take over the world to having trouble taking a shower without help.”

The Three-Year Sleep

Tracy began treatment and quickly felt like she had to fight for help – like there was an animosity between medical professionals and complex patients. When one doctor told her “There’s just some people we can’t fix.”, Tracy entered what she calls the “three-year sleep”. For three years, she would wake up, feel too exhausted to do anything, and would wait until the next day to try again. It took one of Tracy’s children asking her if she was dying for Tracy to finally find the motivation to try one more time.

One More Try

Tracy made an appointment with a new doctor who specialized in complex patients. During their first visit, the doctor looked at Tracy and said, “I don’t know what’s wrong with you. I don’t know what we’re going to do, but we’re going to do something. If you try, I’ll try.”
This doctor’s approach would change everything for Tracy. They set rules to their relationship:

  1. They had to be honest with one another
  2. Neither of them was allowed to quit
  3. An official diagnosis did not matter as much as her quality of life

Along the way, Tracy met other people suffering from complex conditions. “There were people like me! Struggling like I did!”, she exclaimed. It made her recognize how much her, and other people like her, depended on the medical system for their well-being.

Chronic Pain – Everybody’s Purview

“We wake up in the morning and our body does something weird and uncomfortable and who knows why.”

This realization led Tracy to start Help Educate Legislature on Pain, still known as HELP AB today. She began talking to the government and Alberta Health Services to find out why pain was being neglected. At one community meeting with a health authority, a story of a patient who had lost care and taken their own life was shared. This prompted further discussion around common issues chronic pain patients experience in primary care. The response was “It’s not our purview.” For Tracy, this struck a nerve, and from this meeting, she declared “I am going to make this everybody’s purview.”

Following this, Tracy started a Facebook advocacy group, and by the end of the month had 30 members who were already showing their dedication to the cause. HELP AB has two main rules: first, that no matter what they do or say, it had to be in line with the needs of the majority of patients, and secondly, that they will not just complain, they will participate.

From Advocacy to Mediation – HELP AB

Over the years, HELP AB has evolved. Prompted by the passing of a doctor that left many patients without care, Tracy and her team began offering more support on engaging with the medical community. HELP AB provided information about asking for resources, translating doctor speak, and began community support groups across the province. From there, they began to offer mediation between doctors and patients to improve their relationship. Both patients and doctors can approach HELP AB for advice on expressing themselves, feeling heard, and treatment plan agreement.

What is HELP AB?

HELP AB wants patients to understand that it can always get better – maybe not the pain itself, but aspects of it. They also believe in advocating for primary care teams and doctors and are currently doing the following:

  • Sharing the Agreement in Principle – Alberta’s Care Plan for Chronic Pain Patients on Long-Term Opioid Therapy with officials across the country.
  • Combatting medical care shortage and creating plans for vulnerable patients.
  • Working on projects to change stigma around chronic pain.
  • Advocating for compensation, access, and supports for family doctors.

Going Forward

“Treating chronic pain is hard. No two of us are alike” Tracy says, “We wake up in the morning and our body does something weird and uncomfortable and who knows why. We live with a lot of uncertainty, just like a doctor does when treating us. But starting somewhere, anywhere, is where we begin.” Tracy says that the value of a doctor is not in the prescription pad, but in the relationship. Talking to patients about their hobbies, their day-to-day, and small goals makes a world of difference in improving their quality of life. Consider sharing HELP AB with your complex patients and colleagues; sharing their information benefits the patient, the medical professional, and health authorities.

“We live with a lot of uncertainty, just like a doctor does when treating us. But starting somewhere, anywhere, is where we begin.”

For more information, visit www.helpalbertaspain.com or email Tracy.

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