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Volunteer Advocate
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Beyond My Battle

Nell and Martel are two friends with chronic illness who were inspired to start an online support group, Beyond My Battle, for other people living with chronic illness. Inspired by their unique way of bringing people together, we are inviting them to take over our social next week! We took the opportunity to ask them a few questions to introduce you to their project:

Tell us a bit about yourselves!

Nell: I’m 27 years old and was diagnosed with Cystic Fibrosis (CF) at 6 weeks old. I received a double lung transplant at 21 years old after my lungs failed, and in 2014 after going through serious complications I was very sick with kidney failure and ended up needing heart surgery. I am very thankful for my family and friends because they have been my support over the years, I couldn’t have gotten here without their support. Music has always been a huge part of my life and has gotten me through a lot of difficult situation with my health. I currently live in Saratoga Springs, New York and I love spending time outside with my dog, Penny.

Martel: I’m also 27 years old, and have a genetic eye condition called Retinitis Pigmentosa (RP) that causes slow but progressive vision loss. I was diagnosed with RP at age 13 when my family and I realized I was night-blind and had limited peripheral vision. My family is a huge part of who I am and have been by my side through the many ups and downs of living with RP. In my day-to-day life, I am a yoga teacher and a life coach focusing on stress management. Yoga and wellness have changed my life in so many ways and I love sharing the ancient wisdom in new ways. I also live in Saratoga!

How did the two of you meet?

We met because our dads grew up in the same town and share mutual friends. They reconnected last year and, over dinner, discovered they both had daughters the same age and put us in touch!

What is “Beyond My Battle”?

Beyond My Battle is an online community bringing together anyone who is living with a chronic illness or disability. BMB serves as a safe, supportive space where members discuss, listen and learn about how to manage the stresses of living with something we can’t fix…and live life to the fullest! Together, we facilitate weekly discussions around pertinent topics and keep the conversations positive and productive, offering support across all spectrums of struggle. The topics we discuss in BMB go beyond that of a single condition and explore deeper mental and emotional themes.

What inspired you to start “Beyond My Battle?”

When we first met, we immediately discovered a lot of common ground in our two completely different illnesses. We realized that even though we couldn’t, and can’t, relate to what each other is going through on a physical level, we discovered something huge – that we share all the same feelings when it comes to living with something we can’t control. We also both had experienced the negativity that is common among other, illness-specific, support groups. We saw so many of them become places to compare notes, vent, and live in the sadness, fear, frustration, and anger that common for people with an illness or disability. If anything, they increased those feelings. We thought to ourselves, “Wouldn’t it be nice to leave a support group feeling better than when you got there, instead of worse?” So we got to thinking about how to shift the conversation and developed the idea for BMB.

How has the community grown?

Growing BMB in a diverse way is at the core of its success. Because the group has members living with all different conditions, the walls of negativity and comparison collapse, and instead a new foundation of help, hope, and happiness are built. There’s no prerequisite to join the group other than having a medical condition that is beyond your control, and this seems to be the fundamental quality that is causing it to grow. We have seen people’s mindsets shift away from pessimistic just by immersing themselves in the conversations we hold in the group, and the amazing people it attracts.

How do you hope to see it evolve?

It’s amazing to see that we already have people from all over the world in the group. We want to share the message to more and more people, of course, but we also want BMB to become a resource for more than just the people in it. We are seeing that there’s a real need for emotional support across all kinds of diagnoses, and we respect that doctors don’t have the ability to offer this on top of all they do in the medical field, so we envision BMB being a place that they can direct their patients to go. We want to serve as a hub for emotional and spiritual needs for those with chronic illness or disability since our topics go beyond the conditions themselves. Maybe we will even offer additional online resources!

Anything else you would like to add?

Ultimately, two of us really want people to leave BMB with the confidence and tools to go out in the world and change the stigma around chronic illness. That’s what this really comes back to. We want this community of people to be seen as the powerful people we are despite our conditions. We want our illnesses or disabilities to give us strength instead of being a source of insecurity, and we have a platform now to start helping others make that shift. We are really excited about that.