Other than finding knowledgeable medical professionals to help me through the strange journey of sarcoidosis, no easy feat in and of itself, the other thing that I have found vital in my desire to keeping fighting, to keep pushing and to keep living, is making connections with those in a similar situation. Even though I am extremely fortunate to have the love of a spouse that is unconditional, he does not walk in my shoes and cannot know (thank goodness) what I experience so without connection to those in a similar situation, this journey would be far too lonely.
Beyond the loneliness though, there is another important reason for me to connect with others who have this rare disease. It is important to me to be connected in order to share my experience, my strength and my hope with those who are where I was once…scared and overwhelmed. There were people there for me when I needed them and without their knowledge, their stories and their grace, I would not have made it as far as I have. Now, it’s my turn to “pay it forward.” It’s my responsibility to help newly diagnosed sarcoidosis sufferers, to provide them with education and encouragement, to offer them my grace and to give them a reason to hope.
There is something about making a human connection with people in the same boat that eases my own anxieties about life with this disease. So much is taken from those of us with this disease and pre-diagnosis friendships change. People who don’t have my level of fatigue and pain have no idea what it takes for me to plaster a smile on my face and act as if everything is fine but this is what my pre-diagnosis friends want me to do. It makes things easier. It keeps things simple and sometimes it is a good thing for me to do. After all, I still need some normalcy in my life.
But, I cannot pretend all the time. There needs to be balance. Finding others who know exactly what I am experiencing without the need for explanation brings me that balance. Having friends in a similar situation gives me the opportunity to be utterly myself. There is comfort in not having to explain and freedom from guilt in needing to say “no” sometimes. I need the ease of people who need no clarification, who don’t provide unasked for commentary on how I should live. There is a compassionate comfort in these connections. I get positive energy from those who understand me completely and this gives me the strength I need to keep trying to live my best life.