Three Decades of Unrelenting Pain: A Personal Journey
Gillian Best was preparing for university independence when searing, stabbing bone pain overwhelmed her completely. The teenager, excited about studying creative writing and English literature, found herself immobilized in bed, unable to sit up without using her body as a cantilever. "I was crying and wanted to sob – but it was too painful," she recalls of that life-altering moment.
The Skateboard Solution to Basic Needs
Desperate for the bathroom at age 19, Gillian called her mother for help. When her younger brother Dave attempted to carry her, the touch proved agonizing. Instead, he helped her onto his skateboard, where she sat in agony as he carefully wheeled her to the toilet. "I was in too much pain to be scared. Pain like that – it really focuses you. The rest of the world doesn't exist," she remembers.
After a hospital visit for pain relief, the agony gradually subsided, marking the first of many flare-ups that would define her life for the next thirty years. This initial episode signaled the beginning of a lifelong battle with multiple chronic conditions that would reshape her existence.
Diagnosis and Daily Reality
In her teens, Gillian received an ankylosing spondylitis diagnosis – an autoimmune inflammatory arthritis affecting her hips and spine. During her twenties, after years of unexplained diarrhea and weight loss, doctors added Crohn's disease to her medical profile. Now fifty, the Bristol-based writer explains: "With chronic illness, pain includes all sorts of things like fatigue, bad sleep, low mood, and those in turn all make the pain harder to bear."
She describes the unpredictable nature of her conditions: "One day I'm totally fine, and the next day, it hurts to sit, to stand, to walk, to breathe. As my mum would say – 'It's up and down like a toilet seat.'"
Early Warning Signs and Medical Journey
Gillian's pain journey began even earlier, during her school years. A skilled swimmer, she experienced a shocking spasm during practice that left her immobile in the pool. "I remember this horrible pain going down my bum and back of my leg, and I couldn't kick, I couldn't move," she recounts. The embarrassment of needing teacher assistance to dress after the incident marked her teenage years.
The pain returned with such severity that by age twenty-one, Gillian was using a cane and pulling herself upstairs. During a tearful consultation with her family GP, she found empathy and a promise to investigate her symptoms thoroughly. The eventual diagnosis brought frightening revelations about potential spinal stiffening and rib deformation that could crush her heart and lungs.
Medical Management and Social Challenges
Gillian's current pain management includes maximum doses of paracetamol and naproxen during daytime hours, amitriptyline at night, and heavy reliance on heat pads. She has faced frustrating medical advice suggesting simple solutions like paracetamol and hot baths, and has occasionally been accused of being a "drug-seeker" by healthcare professionals.
Social interactions present their own challenges. "When well-meaning people say 'feel better!' to me, that really irritates," she admits. "It grates on me because though I might get over a flare, I'll never be rid of my disease."
The Full-Time Job of Pain Management
Living with chronic conditions requires constant management that Gillian describes as "another full-time job." This includes coordinating doctors' appointments, tests, scans, medication deliveries, exercise routines, and planning activities around unpredictable physical limitations. "It's learning to understand the disease's nuances, anticipating flares, and learning to live with a kind of low-key background flu-ish feeling," she explains. "It's a bit like wearing a heavy backpack for life. Everything takes a bit more energy."
Impact on Independence and Daily Life
The illness has significantly affected Gillian's independence and social life. She recalls calling her best friend for emergency pickups in her twenties when pain became overwhelming. Even basic activities like walking require planning: "I live at the top of a hill, so that's an added challenge. When I have a flare, I'm afraid I'll get stuck, so I have to rely on my partner Connor to come with me."
Despite maintaining an active routine of walking 8km daily and swimming 8km weekly, recent flare-ups have left her unable to perform basic self-care. "I was too stiff and sore to brush my own hair," she reveals of a particularly difficult period.
Career Limitations and Personal Adaptation
Gillian has made significant career sacrifices due to her conditions, turning down her dream job in Japan over concerns about self-advocacy during flare-ups. As a writer, she adapts her workdays to her illness, turning cameras off during virtual meetings on days when showering or dressing proves too painful.
She describes chronic pain as "relentless and grindingly monotonous. It's another thing to deal with and care for – like a really s*** pet."
Finding Solutions and Spreading Awareness
Despite her extensive medication cabinet, Gillian has discovered that stretching and exercise provide her most reliable relief. A recent two-week hospital rehabilitation course proved "life-changing" in her pain management journey.
Her new book, Chronic: Understanding Pain, explores why treatment remains unreliable for millions living with chronic pain. Through interviews with neuroscientists, medical doctors, academics, psychiatrists and psychologists, she examines what she calls one of the "great public health crises of our age."
Hope for the Future
"I am optimistic, and eager to see what the next game changer will be," Gillian states. "I feel like there is going to be something big for people with cancer, diabetes, long covid, migraines, autoimmune diseases and post surgical pain."
While dismissing social media cures like drinking apple cider vinegar, she expresses faith in scientific progress: "Science is going to cure it. We're never going to be rid of pain, but we're going to figure out ways to manage it better, to diagnose it faster and more accurately."
Gillian celebrates the researchers working on pain solutions: "These people are extraordinary, and so many of them have an experience of chronic pain. Extraordinary people are going to change all our lives for the better. It's amazing."
