Sarah began experiencing low back pain in April of 2019. The pain started off mild, but quickly became debilitating. Soon, she found herself having to get out of bed in the middle of the night to take three ibuprofens, stretch for 20 minutes, and return to bed hoping sleep would find her. Often, it didn’t.
She delayed seeking medical help because she assumed the pain was temporary. She attributed it to her Accutane medication, known to cause musculoskeletal pain
to sleeping on her boyfriend’s unfamiliar mattress after moving out of her parents’ house, and to working from home on a cheap office chair during the pandemic. As many do, she dismissed her pain as normal and temporary.
The Transformation
As the pain persisted, Sarah’s life changed dramatically. Before her symptoms, she had been a competitive hockey goaltender and an “Energizer Bunny” who attended school full-time, worked over 30 hours a week, and played competitive sports. Now, she had gained 40 pounds because physical activity became too painful. She began experiencing night sweats, couldn’t sleep, and grew increasingly depressed as her condition worsened.
When Sarah finally decided to see a doctor, her issues and pain were dismissed and attributed to her weight gain and irregular menstrual cycle. Still in search of answers, she decided to seek advice from her family physician, who was more receptive and ordered an HLA-B27 blood test and a physiotherapy referral. After months of therapy with no improvement, and with the blood test coming back as “peu probable” (not likely), her physiotherapist requested she get an MRI. The results came back normal, leaving her doctor with no more solutions to offer.
Sarah’s partner, who worked in healthcare, encouraged her to insist on a rheumatologist referral. By chance, her family doctor had just attended a conference by a rheumatologist relocating to Sarah’s area who was accepting new patients outside the usual wait-list system. Sarah called immediately after leaving her doctor’s appointment and secured a spot.
Professional Support
The rheumatologist proved to be “an absolute godsend.” From the first appointment, she listened, never dismissed Sarah’s pain, never blamed her for her issues, and made it clear they would work as a team. She re-ordered the HLA-B27 test and requested a new MRI—this one lasting an hour and a half rather than 20 minutes, specifically designed to detect spondylarthritis.
The results showed damage to Sarah’s sacroiliac joint consistent with Ankylosing Spondylitis. A blood sample sent to a different hospital confirmed she carried the HLA-B27 gene. After 3.5 years of symptoms, Sarah finally had a diagnosis.
The diagnosis explained many aspects of Sarah’s life that she had always assumed were normal, chronic exhaustion regardless of how much she slept and poor posture so noticeable that people would physically yank her shoulders back to make her stand up straight.
Treatment and Adaptation
Her rheumatologist started her on a treatment plan that eventually led to Cimzia, a biologic medication that eliminated nearly all her pain and vastly increased her energy. With this relief, Sarah could go to the gym 3-4 times weekly and play recreational hockey again. Movement was crucial for treating her condition, but impossible without medication to control the symptoms.
Sarah had to rethink many aspects of her life. Previously, she could complete all her routine chores like groceries, cleaning, laundry and cooking, in a single day. Now, some days, even taking a shower drains her energy completely. She began living by the “spoon theory,” waking each morning with a finite amount of energy that she had to allocate carefully.
Professional and Personal Relationships
Sarah’s workplace proved exceptionally supportive, offering flexibility with her numerous medical appointments and allowing her to start work later on days when her morning pain was severe. Her coworkers supported her fully, regardless of how many doctor’s appointments she needed.
Her romantic relationship was more complicated. She and her boyfriend had been together long enough that he had seen her pre-symptoms, pre-diagnosis, and post-diagnosis – three vastly different versions of herself. Though supportive and helpful, the relationship eventually ended, and Sarah believes the shift between these dramatically different versions of herself may have been a big contributing factor to the relationship ending.
Emotional Struggles
Three years after diagnosis, Sarah found herself in the “mourning stage,” grieving for her past life when she didn’t need multiple daily medications and bi-weekly injections, when she could complete a daily to-do list, when she could live pain-free. As many do, she struggled with others not understanding her experience. When she said she was tired, people thought she was lazy, not realizing her immune system was literally directing her body’s energy toward attacking itself.
Sarah’s path took another difficult turn when she developed nerve problems in her hands and feet. After filling more than 60 vials of blood in three months and undergoing a spinal puncture, she was diagnosed with a second rare autoimmune disease called CIDP (chronic inflammatory demyelinating polyneuropathy), an extremely rare side effect of Cimzia, the medication that had given her relief.
She had to stop taking Cimzia, a heart-wrenching decision. She had told her neurologist that if forced to choose between having nerve problems for life or stopping the medication, she might choose the nerve problems. For three months, she completely stopped treating her AS while doctors monitored her nerve condition. She quickly regressed to her previous state, regaining 15 of the 40 pounds she had lost.
With the cause identified, Sarah eventually started a new biologic, Cosentyx, and her nerves began slowly healing. The experience forced her to confront the reality that “chronic” truly means “always”. She would always have doctors’ appointments, always face potential side effects, always live with the possibility of losing hard-won progress.