Patient’s Perspective - The Importance Of Community When Living With Chronic Pain

In every area of life, community is important. The people that we surround ourselves with can make a massive difference to our lives, whether it’s with support during the tough times or celebrating the good times. For just about every area of my life I’ve immersed myself within a community, including the crafting community, the LBGTQ+ community and the disabled, chronic illness and chronic pain community. When you live with a long term health condition, a disability or chronic pain, finding a supportive community can be life changing. Sometimes just feeling a little less alone can make a difference.

Particularly during the past 18 months we’ve all come to see the importance of being a part of a community, whether that’s interacting more with your local community or discovering one online. Covid-19 really highlighted how big a part social media can play in making people feel less isolated. Of course, it’s like anything, it’s not all positive but for me my life has improved a lot thanks to finding online communities of people who are dealing with similar struggles.

Particularly when it comes to chronic pain I think a lot of us have experiences of feeling alone. Even the most understanding family members and friends cannot fully grasp what it’s actually like to live with persistent pain, so this is where communities come in.

It’s all about finding the community that works best for you, that might be a Facebook group, an online forum, an in-person support group or something else. It’s important to remember that whilst being a part of a community can be helpful, they can begin to become toxic at times. Try not to get caught up in spaces where people attempt to outdo each other when it comes to the severity of their pain or symptoms. You’ll want to find a well balanced space where you can share helpful advice, experiences and vent without it being overly negative. Immersing yourself in a completely negative space can end up doing more harm than good.

One of the biggest benefits of finding a community when you’re living with chronic pain can be the advice and tips you can learn from others. People often share what tools help them best, like daily living aids, as well as what people have in their flare up plan and what forms of movement have worked best. The best advice I’ve received has often been from chronic pain communities, social media has been able to connect groups of people whose paths wouldn’t otherwise cross!

Whether you’re at the start of your chronic pain journey or you’ve been living with it for years, communities can absolutely make a positive impact in your life. It’s just about finding the right one for you!

You can learn more about developing your community in module 2 of the Leva Clinic Pain Management Programme.

If you would like to get in touch with Shona, you can follow her on Twitter, Instagram or drop her a message via her website.