Like a lot of people, when I was first diagnosed with sarcoidosis, I took to the internet. I needed to learn more about this strange disease. In my quest to find more information about it, I also found other people who have it through online support groups. In these groups, I came to understand the power of grace, the meaning of kindness and the joy of unconditional friendship.
When I was newly diagnosed, I was scared and confused and I had a lot of questions. People who were well experienced in living with this disease held my virtual hand as I began the relentless journey of life with a chronic illness. They patiently eased my anxiety about the unknown. They gently guided my attitude to a better place and they showed me overwhelming amounts of love and encouragement when I felt my lowest. Without them, I would have been utterly alone as I faced a life altering voyage into the world of the unwell.
As I’ve come to know my virtual sarcoidosis family, I’ve observed some pretty amazing things about them. They rarely complain and when they do, they always apologize for it. No matter what they feel or what they are going through, they will always make time for someone else in need. My virtual family is brave. They are fierce and they are proud. Having sarcoidosis does not stop them from striving to live their best lives.
My sarcoidosis family sets an example for me about the kind of person I want to be with this disease. I want to be strong. I want to stay positive. I want to keep my faith and I can do all of these things because my sarcoidosis family gives me the drive to remain focused on what is in my control, rather that what isn’t. I would not be doing as well as I am without the collective power of my virtual clan of sarcoidosis warriors!
We are a relatively small community. We have lost members and when we do, we grieve together. We cry for their families and share in their pain. Every time someone in our sarcoidosis family leaves us, we feel the hole they leave behind and their loss only makes us want to fight harder to find a cure.
Having sarcoidosis sucks. That’s just the way it is. It makes daily life difficult. It’s unpredictable. It hurts. It’s hard to breath and it is a challenge to think straight. When you live with chronic sarcoidosis, your world shrinks because you simply cannot keep up with the rest of it. It can be lonely and it is easy to feel abandoned by people you once thought were your friends. They don’t mean to leave you behind. They just don’t understand your experience and as a result, they drift away. For all these reasons, it is important to connect with those who do understand, who have walked in your shoes.
During Sarcoidosis Awareness Month, I want to take a moment to say thank you to this beautiful tribe of people who keep me from feeling abandoned and who inspire me to keep fighting. I’ve been formally diagnosed with this disease now for five years. My goal is to pay to forward. My hope is that I can be the comfort someone new to this disease needs, that I can bring them safely into the fold of the loving arms of this wonderful virtual family.