The Power of Community and Connection
Took this from flight to DC…
Living with rheumatoid arthritis has brought me close to people I have never met. I know this may seem odd for people to hear. When you have a diagnosis like this it can get lonely. We tend to isolate. There are periods of time where we are forced to stick close to home. I live with only my dog. He’s a blast to be with but sometimes you just need another human. There are many on line communities of people that I have never met but have chatted with for years. People I can complain with, that teach me, that motivate me and that are up with painsomnia at the same time I am. It’s powerful to know there are other people out there. Building a face to face community of fellow auto immuners has proven to be difficult in my neck of the woods.
This week I’m in DC on Capitol Hill representing New York as a patient advocate for the American College of Rheumatology. I am with other advocates from other States. I am going to try to explain what that feels like. Imagine you are walking in a woods that isn’t familiar to you. You are alone and there isn’t a soul around. You realize you are off track, turned around, you don’t know which way is out. You become anxious, don’t feel yourself, you are consumed with fear, mad at yourself for letting this happen. The tree line feels like it’s closing in on you. The sun starts to show signs of setting, you don’t have cell reception, battery is low. All sorts of things are racing through your mind. You are frozen. You get yourself together enough to choose a direction and start walking. You keep going not knowing what’s coming or what is next. Several minutes later you near the edge of the woods and see your car parked in a parking lot with people that were racing to get out just like you. You all smile, give each other high fives and exhale because you shared something that no one else saw or experienced with you. To walk into a room of people that SEE YOU is enough to make me drop to my knees in tears. To see young children/adults and their parents talking about the impact pain has on them is humbling. To see people your age in wheelchairs or needing an assistant to bring food to their mouths makes me grateful in a way I haven’t quite figured out how to express. It’s also a sobering reminder of where I could be. To hear a young women share in tears that her parents, nearing retirement, have taken a second mortgage out on their house to afford her treatments angers me and saddens me. We all just want to be seen, we all just want to be heard, we all just want compassion, we all just want to be asked “ help me understand what it feels like to be in your body”, we all just want to be independent and have access to what keeps us there.
