You’re never alone in the cystic fibrosis community. Get connected!
Loneliness may be part of having a rare disease, but help is available
Isolation runs rampant in the rare disease community. As a byproduct, so does feeling alone. My journey with cystic fibrosis (CF) has been challenging, and I’ve often felt like I’m the only one fighting this disease.
Thankfully, I found camaraderie through community right before my double-lung transplant five years ago. I’m grateful that BioNews, the parent company of this website, exists to help me accomplish my intent for writing “Valiant Voice“: to make others feel less alone, too.
Living with CF can be really isolating. I’ve often been homebound while sick, protecting against illness, or recovering from surgeries. I have incredible family and friends who are here for me when I need anything, but they all have their own lives — which don’t stop when my health matters arise. Life keeps moving for everyone else, and sometimes I’m at a standstill. That’s a lonely road.
Even though I’m post-transplant, my condition can still can be isolating. I have to be more vigilant due to my suppressed immune system. I often avoid public places to protect my health, even more so since the pandemic. And transplant life is complicated; I have incredible new lungs, but I don’t always feel well because I still have health challenges. Surrounding myself with people who understand that fact is essential for my overall well-being.
My mental health has sometimes made me feel alone, too. Living with a rare disease takes a toll on mental and emotional health, as well as physical health. We should normalize getting treatment for mental health; that’s essential to give others permission to seek help when necessary.
It also helps to understand how the complexities of medical trauma affect us. Talking about hard things lets others know they aren’t alone in their struggles. It’s healthy to have a safe space for such sharing.
Communities can help
The level of loneliness I experienced changed drastically when I joined the CF, transplant, and rare disease communities. I see others who are enduring similar health crises and balancing multiple chronic illnesses while trying to live their best lives. It’s comforting that I’m not alone in holding the culmination of these tensions.
That’s why making friends in our communities is crucial to our overall well-being. It’s validating to see others fighting the same rare disease as me. I’ve learned we can’t walk this journey alone, nor are we meant to. And sometimes we just need the extra encouragement of knowing that if someone else can do it, so can we.
I’ve had to get creative with ways to connect with others when I’m isolated, especially since I live alone. Those of us in the CF world have been ahead of the times, using the internet to connect for several years. I regularly engage with friends in online Bible studies, writing groups, and random Zoom chats. Sometimes my friends and I will do chores together while on FaceTime just so we’re not alone.
There are several ways to plug into the CF and transplant communities. Several organizations, for instance, have helped me connect with people who also have my rare disease. Here are a few: The Cystic Fibrosis News Today Forums help us share information and interact with others. The Cystic Fibrosis Foundation holds virtual conferences, including BreatheCon. The Cystic Fibrosis Research Institute has virtual support groups and conferences.
I’ve found my dearest friends through networking in various social media groups. It’s amazing the deep connections that are cultivated by having the same disease. It’s made a radical difference to have friends who truly get it!
In case you need a reminder: You are not forgotten. You are seen, valuable, and loved as you are. You’re never alone. Come join our rare disease community!
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.