Living Beyond Pain: Paige’s Path to Managing Chronic Pain

Authors: Anika Kumar, Zoe Cochran, Samir Ernst

Editors: Katherine Lai

May 18, 2026 at 11:00 AM

        For several years, Paige faced challenges getting physicians to understand that her symptoms were more than just pain, and the delays in her diagnosis pushed her to keep searching for answers. Today, she uses her experience to support others in better understanding chronic illness, managing pain, and feeling less alone in their journeys.

        As Paige was finishing up high school, she began experiencing chronic pain in her shoulder and neck. The pain became so unbearable that she had to visit a doctor, who promptly brushed it off as being stress and posture-related. To her, that seemed like a valid diagnosis given the pressures of applying to colleges and how her work demanded long periods of time sitting at a desk in front of a screen. However, she began to suspect something more, as her neck pain worsened and her migraines became more frequent. Her intuition was confirmed when, years later, at age 20, she finally got an X-ray that showed two cervical vertebrae fused together. This allowed her doctor to officially diagnose her with Klippel-Feil syndrome (KFS), a condition that develops in the womb but whose symptoms often do not fully manifest until later in life. Those afflicted with KFS are born with an abnormal fusing of the upper two spinal vertebrae, but the severity of the symptoms and physical manifestations may vary. At times, abnormalities may be so subtle that they require X-rays or MRIs later in life to diagnose KFS. 

        Following her diagnosis, Paige had to learn how to navigate her final years of college while battling KFS. After graduating with a social work degree, she began working as an educational assistant, supporting students with a variety of developmental disabilities, such as autism and Down syndrome. Paige had to be more selective when job-hunting to be mindful of her own mental and physical health. Luckily, her job allows her the flexibility to take off during the summer months and the occasional school breaks that occur each year. Her position also provides the benefit of 10 days of paid sick leave each year, which is especially valuable since Ontario does not require employers to offer a minimum amount of paid sick leave. All of these factors give Paige the chance to rest and recover when she experiences her flare-ups. 

        Managing her chronic pain has become a central part of Paige’s life, especially because her symptoms vary daily. Some days she’ll have severe migraines, other times she’ll have intense neck pain. Paige realized that on days when she does not get at least 8 hours of sleep, her symptoms worsen. So recently, she has been prioritizing her sleep, which helps her recover from the persistent fatigue and low energy associated with KFS. When symptoms intensify, she has learned to step back from work and focus on her well-being.

        Learning when to prioritize her own health has been especially important as Paige has learned more about what triggers her flare-ups. She has found that movements involving upper body strength tend to trigger more pain, making everyday tasks, like lifting laundry baskets, more difficult. She even found that low atmospheric pressure, which often occurs before heavy rain, causes her tissues to expand and put pressure on already damaged vertebrae, intensifying her pain. Over time, learning how to minimize these triggers has become an essential part of her routine. To help fight against the pain, Paige has also found that topical menthol pain relievers and regular chiropractic visits have assisted with her pain management in conjunction with her prescribed medication. The menthol creams help reduce muscle soreness, while the chiropractic adjustments help relieve pressure on her spine.

        Paige had applied for the Ontario Disability Support Program, which provides $1,300 per month for residents with significant disabilities, but was rejected after a doctor’s assessment determined her condition was not severe enough to be affecting daily life, work, or self-care. Not qualifying means that Paige has to pay out of pocket for many of her treatments and doctor visits. This adds another challenge to managing her condition, but Paige is optimistic as she tries to apply again soon and hopes to be accepted. Her experiences dealing with chronic illness led her to use advocacy as a way to support others facing similar challenges.

        After feeling that there wasn’t enough representation for people with chronic pain and rare diseases, Paige started her Instagram account (@paigethewellnesswarrior) and Substack blog, Low on Spoons, a play on how she measures her energy in “spoons.” Through her platforms, Paige provides education about chronic illness, chronic pain, and daily symptom management while also sharing her own experiences living with KFS. 

        When discussing how her online presence grew, Paige explained: “I started my Instagram just because I wanted to talk to people online about it and raise awareness… I was able to make online communities, online friends, talk to organizations like RAREserved, and spread more awareness”. Through social media, Paige has found connecting with people facing similar challenges to be especially rewarding. She shares that “authenticity is key” to writing an impactful blog. She also enjoys collaborating with beauty and wellness brands and hopes to pursue content creation full-time so she can dedicate more time to managing her symptoms and advocating for chronic illness awareness.

        Paige encourages her followers and others living with chronic illnesses to advocate for themselves because “you know your body best”, emphasizing the importance of speaking up to healthcare providers when something feels wrong. Through her own experiences, she has relied on self-advocacy and perseverance to obtain proper treatment, navigate the healthcare system, and learn how to live with a challenging diagnosis.

        Reflecting on her journey, Paige wishes she had noticed her symptoms earlier, as it was hard to recognize anything out of the ordinary as a teenager. Looking ahead, Paige hopes to make the “diagnosis journey a little easier in the future.” She hopes that medical professionals will dig deeper instead of defaulting to common explanations and following a standard route of care, such as attributing symptoms to stress, so that individuals with chronic and rare diseases can be diagnosed earlier and receive treatment faster.