The Importance of Building Heartfelt Chronic Illness Community

I can’t count how many times I’ve been told it is not healthy to have continual interaction or create bonds with others who cope with chronic conditions. What others fail to see? A group whose lives parallel in many ways regardless of diagnoses. The connections formed support unforeseen growth, fulfill longing for understanding, and provide a place for relating, empathetic listening, and one of the largest cheer squads I’ve seen when a member propels forward in health or personally envisioned endeavors.

Many different bonds — whether you empower and educate by leading with your story or prefer to interact behind the scenes, you never know how many lives you’ve touched by channeling bravery to help those struggling silently. It doesn’t mean that you don’t value your current supports, however, as I’ve been told honorably the contributions you’ve or I’ve made as an Internet peer have brought hope for others futures and motivated resilience to continue to live a life they previously felt was so worthless they no longer wanted to be part of.

Flourishing these happenstance online connections offline is something as beautiful as the community you have found yourself belonging. One of the things I encourage often is to remain true to who you are and stay in touch with your passions no matter what may come your way. I adore writing whether it’s creatively, academically, educationally or reflectively. My fuel for writing is accompanied by a love for stationary from finding “ideal” pens to elegant paper or cards.

Shortly after joining Instagram, I combined the two rekindling my love for both and connecting with others in the community in a meaningful yet old-fashioned way. I set pen to paper when I am able to post letters to others globally to chat about what we adore and to provide support in many forms (validation, motivation, celebration). The beauty of connecting a couple of my hobbies with my passion for our community is that although it brings me joy to be a part of your lives in a small way, I am hopeful those who receive letters are met with warmth and whatever they may be longing for at the time.

Why am I humbly sharing about this act? It’s not for praise nor admiration, it stems from a place of raising awareness to address what some may not be privy to seeing. In a world where we are almost always connected in some fashion, I think there is something wonderful in the possibility of strangers or online friends to be able to foster connections where there is no expectation for something in return — the value for both is in the kindness itself. Where distance nor time has no bounds on what you share. How relationships or someone’s presence does not always require physicality to convey compassion, support, love or appreciation.

There is immense value in sharing your strength with others and shining a light on the amazing things they bring to life as they are likely already aware of the strife they face. Each of you bring something amazing to this world, so I encourage you to reconnect with your passions or make the leap to try new ones you’ve had your eye on. Simply taking time for a few things you love may foster a place of love, hope and happiness for others who are silently watching or value your connection.

Living with chronic conditions brings an unforeseen amount of solitude and plenty of variability. It is through courageous sharing and dancing with vulnerability where we collectively and individually create a place where those who may no longer feel they’re walking alone. Each of our experiences are as unique as we are and so are the supports one may access.

After diagnosis, there is an adjustment period for you and your current supports to learn the best way to support your lives. People who were always by your side now watch from the sidelines or leave you be. It’s not about searching to fill the void from those that leave, instead, forming connections internationally provides the opportunity to form ties that otherwise would’ve never been. Focus on the people who choose to be there and see you as a valued human being. Channel your feelings and despite others naivety, never shy away from being who you desire to be. You have value in this community whether you bring positivity, share reality or seek empathy. Don’t miss out, reach out as there are many here, each of us at different stages to support you alongside your journey.