Chronic pain is pain that lasts for more than three months. Up to 3 in 10 young adults may have chronic pain, yet most research focuses on middle-aged or older adults. Being a young adult is an important life stage where lots of changes take place such as going to university, starting work or having relationships. This research project focused on understanding the experiences faced by young adults with chronic pain. Anyone with chronic pain could take part, including people living with Inflammatory Bowel Disease (IBD).
To make sure people with lived experience were involved in this research, the opportunity to get involved was shared on the Crohn’s & Colitis UK website and through social media channels.
The researchers interviewed 14 young adults, aged between 19 and 30, living with a range of conditions which can cause chronic pain. This included two people living with IBD. They talked about what it is like to live with chronic pain and found common patterns and themes.
As a young adult with Ulcerative Colitis, I recognised a lack of understanding and research in this area. Undertaking this study provided a valuable opportunity to address this gap, and it was a privilege to engage with other young adults and hear about their experiences.
Dr Paige Karadag, Researcher and Chair of the Young Adults Advisory Panel
Findings:
- The role of self-advocacy
Young adults needed to ‘self-advocate’ by speaking up to communicate their needs. They felt that healthcare professionals held the stereotype that young adults are healthy, which is why they had to “speak up” to get a diagnosis and access treatments. Having a diagnosis gave the young adults the validation that their pain was real, and it made them feel believed. They could then focus more on trying to manage their pain, rather than convincing others of their pain.
2. Understanding of chronic pain is essential for self-management
Young adults felt it was important that they understood their chronic pain so they could manage it. However, most were disappointed with the level of information given to them by healthcare professionals. Charities were praised for the information that they provided. The young adults explained that there was a lack of understanding from employers about the way that chronic pain could impact their work life. This meant that some felt pressured to prioritise work demands over managing their pain and others left jobs they enjoyed due to this.
3. Coping through compassion
The young adults involved in this study did not want to be defined by their pain and their identity played an important role in developing ways to cope. They all adjusted their day-to-day life so that they did not miss out. A big part of being able to adapt was through being kind to themselves and the compassion of others.
What does this mean?
- Healthcare professionals could signpost young adults experiencing chronic pain to the information already provided by charities.
- Employers need to understand that young adults can experience chronic pain and how they can make adjustments and offer support to help young adults to stay in work.
- There is a need to explore ways to raise awareness of charity information available about chronic pain in young adults.
Paige would like to thank all the young adults who took part in the research and shared their experiences. The research study would not have been possible without you!
Dr Paige Karadag
The full paper has been published in Journal of Health Psychology. You can access it via this link https://journals.sagepub.com/doi/10.1177/13591053251344236
Want to get involved in research?
The best quality research happens when people with Crohn’s and Colitis are involved, and you can make a difference at every stage of research.
