How Diverse Online Communities Can Help Manage Chronic Illness

Knowing that later this week is World Health Day, I decided to visit the World Health Organisation website and search for ‘chronic disease’, which they refer to as noncommunicable diseases.

I’m not usually into stats (definitely when it comes to Stage 4 breast cancer), but I wanted to share what I discovered…

According to the World Health Organization noncommunicable diseases are responsible for 74% of all deaths globally, with a staggering 41 million people dying each year. Even more troubling is that 86% of premature deaths (before age 70) occur in low- and middle-income countries.

But instead of feeling powerless and overwhelmed by such shocking statistics, I want to share how we can have an impact. We can provide support to those feeling isolated and unsupported by their health system. As I share this will also enrich our experiences with chronic illness and life.

How do these chronic illness statistics make you feel?

I find reading statistics like this jarring. It's hard not to feel grateful for the healthcare system in my country, Australia, which has allowed me to access treatments and support. Although there are short fallings in the health system, my experience for over 25 years with multiple sclerosis and now advanced breast cancer has been positive. I can access treatments, MRIs, and PET scans. Then the guidance of specialists, allied health professionals, and alternative therapies have made living well possible.

Although I’m forever grateful, it’s hard not to feel guilty that others around the world are facing these illnesses without the same level of support. I don’t know how I would cope. But it’s a stark reminder that where you are born can significantly impact your health outcomes. I’ve written about the unfairness of chronic illness, but this brings it to a whole new level.

Years ago, I had the privilege of spending time in Romania and gained insight into this inequity. I saw first-hand the barriers families faced in accessing support for their children with disabilities. Getting around Craiova in a wheelchair was near impossible. I remember one mother carrying her 7-year-old son on public transport and then a long walk to access the service. Parents were so appreciative of the allied health professionals working with their children. The centre was filled with positive energy.

However, in the face of such global statistics, it’s hard not to feel powerless. What can someone sitting at her desk in Victoria, Australia, do to have an impact?

Create an inclusive online chronic illness community.

Community members that live in countries that have less developed health systems will benefit from:

1. Access to information and resources. Not everyone has the same access to information or resources about different chronic illnesses. An online community provides the opportunity to share information on new treatments, therapies and resources they may not have known about otherwise.

2. Improved sense of community. People with chronic illnesses from countries with limited support may feel particularly isolated or alone. Connecting with others from around the world can provide a sense of community and connection that others may not find in their local area.

3. Increased sense of empowerment: Participating in an online community with members from different countries can help people with chronic illnesses feel more empowered to take control of their health and advocate for themselves. They may find inspiration in the stories of others and feel more confident in their ability to manage their condition despite the challenges they face.

But the benefit is not one-sided.

The benefits of chronic illness online communities.

The key to the Hurdle2Hope journey is challenging how you think about and experience your illness and your life. That is why being inclusive and encouraging diversity is so important in living well with chronic disease.

I know that early on with MS I felt stuck, unsure of how to move forward. This is what happens when you are surrounded by sameness. ‘Your circle’ doesn’t always encourage you to think differently. You often have similar pasts and aspirations for the future. I know that it wasn’t until I opened my mind to new ways of thinking that I created a life conducive to my wellbeing.

 Have you ever had a negative experience in an online community?

Twenty-five years ago, there weren’t very many online communities around (makes me feel old). I did go to some events with local MS organisations but I found the experience uninspiring. The focus was more on what was wrong instead of how to move forward and embrace life. I was only 22. I had so much living to do! 

That is why my experience being diagnosed with Stage 4 Breast Cancer has been so contrasting. The presence of online groups provides a new dimension to a life-changing diagnosis.
Facebook Groups I’ve joined have been inspiring. The support offered to those navigating end of life brings you to tears, but in a good way. It’s beautiful. Some women who would otherwise be isolated now are loved. 

Now I find myself re-entering the world of MS. Following various hashtags on Instagram has also motivated me to challenge my approach to MS, even after 25 years with this disease.

Living with a chronic illness is tough. It can be even more difficult if you are living in a country with limited resources. 

Being part of a group that encourages diversity and challenges existing thinking can benefit everyone’s overall wellbeing regardless of the country you live in. 

Connecting with others and learning new coping strategies and approaches to managing your chronic illness will improve your physical, emotional, and mental health.

In summary,

Community members that live in countries that have less developed health systems will benefit from:

1. Access to information and resources
2. Improved sense of community
3. Increased sense of empowerment

But it’s not one-sided. That’s why I’m excited to start this new Hurdle2Hope community. A safe space for us to connect with others from around the world. Building a sense of belonging and connection that might not be available in our local areas. 

If you’re looking for a chronic illness community that celebrates diversity and challenges how you think about and experience your illness and life… Sign up for the Hurdle2Hope weekly blog below so we can stay connected. You can also join us on Instagram @hurdle2hope. Let’s start learning from each other to live well with chronic illness.