Part 1 of 2 Living with a chronic illness is a challenging journey that millions of people around the world face daily. I have lived with chronic, or persistent, neuropathic pain for over 37 years following a near-fatal motor vehicle accident and in 2021 I was diagnosed with mitochondrial disease, a rare genetic disorder. Both have, and continue to have, a significant impact on my life.
When considering chronic illness, from managing symptoms to navigating healthcare systems and societal expectations, those living with chronic conditions often find themselves grappling with a complex web of difficulties that can impact their overall quality of life. For some, they may be accused of malingering to achieve secondary gains.
Examples of secondary gains include “avoiding onerous tasks/work, or rewards opioid-seeking behaviours”.  I would offer that for most people living with a chronic illness, this is not the case. Understanding this may be true in very limited instances, I believe for the vast majority who live with a chronic illness, their primary losses significantly outweigh any perceived secondary gain. I would suggest that most people don’t want to be living with long-term health conditions that must be managed daily; it’s physically and emotionally exhausting, stigmatizing, demoralizing, and often strips one of their identity.
In this article, I’ll discuss some of the reasons why some individuals with chronic illnesses, including persistent pain, don’t want to be living with their conditions by shedding light on the multifaceted challenges encountered in healthcare and society.
When considering the healthcare challenges people face, we’ll consider financial strain, limited access to specialized care, and mental health implications.
One of the most significant challenges for those with chronic illnesses is the financial burden associated with long-term medical care. In considering chronic pain as an example in Canada, the total direct (health care) and indirect (lost production) cost of chronic pain in 2019 was estimated to be between $38.2 and $40.3 billion. However, not all costs are covered by the healthcare system and people living with pain and other long-term conditions must pay for travel and accommodations, specialized medical treatments, and medications. The costs of medications, treatments, and regular doctor visits can quickly accumulate, placing significant strain on individuals and their families. In some cases, the financial burden becomes so overwhelming that it contributes to a sense of hopelessness and frustration. For those who are no longer able to work, or must work a reduced schedule, and are fortunate to have workplace benefits, disability payments typically provide payments less than their regular income.
Further, access to specialized healthcare can be a significant barrier for individuals with chronic illnesses. In some regions, there may be a shortage of healthcare professionals with expertise in certain conditions. This can lead to long wait times for referral appointments to specialists and a lack of continuity in care, making it challenging for people to manage their conditions effectively.
Several studies suggest that people with a chronic disease are at risk of psychological distress  and chronic illnesses often come with a heightened risk of mental health issues such as anxiety and depression. The emotional toll of living with a condition that requires constant attention and adaptation can be overwhelming. Unfortunately, mental health support is not always readily available or integrated into an overall healthcare plan, exacerbating the challenges faced by individuals with chronic illnesses.
While healthcare challenges are difficult enough, societal challenges can be more so as they are often deeply personal. In this, we’ll consider the issues concerning stigma and misunderstanding, limited accommodation, and loss of identity and independence.
Society’s lack of understanding about chronic illnesses contributes to the stigma surrounding them. Individuals often feel judged or marginalized, leading to a sense of isolation and alienation. The societal pressure to conform to a certain level of physical or cognitive ability can exacerbate feelings of inadequacy among those with chronic conditions.
Concerning accommodations, society still lacks sufficient accommodations for individuals with chronic illnesses. Whether in the workplace, educational institutions, or public spaces, the absence of necessary adjustments often hinders the participation and inclusion of individuals with chronic conditions. This lack of accessibility further compounds the challenges people face.
In Canada, this is underscored by a 2008 Supreme Court of Canada decision that upheld an employer’s termination of an employee after missing more than two and a half years of work due to physical and