Communicating About CRPS
The first time I met someone else with CRPS was at the Cleveland Clinic. Until then, I felt as if I was the only person in the whole world that had it, but in reality, I was just one of the few children that did. I don’t think I even realized how lonely and unheard I felt until I met my friends at the Cleveland Clinic. They understood my feelings and accepted my pain, which was something people at home couldn't do. Granted they tried, but I always ended up feeling like my pain was less than whatever they were trying to relate it to or frustrated because they didn’t understand. So, I just kept quiet. Meeting my friends at the CC was a game changer, I had a voice again. Everything I wanted or tried to say back home, I could say to them, and even better, they could relate. These friends became like family to me. We all shared similar experiences, endured the same hardships, and at some point or another felt alone, so we leaned on each other. It was these friends that showed me I was never alone.
Today, I have met many people who suffer from CRPS or other chronic illnesses, and I must say the feeling of talking with someone who understands what you are going through never gets old. There is an immediate connection and bond with these people because it's not everyday you get to talk to someone who can relate to your pain. With that being said, it's not everyday you get to talk to someone who can relate to your pain, so we have to learn how to talk about it with our family and friends.
For me, I am still working on this, but I find that a good place to start is by letting your family and friends know they can ask questions. Meaning, you have to be open to answering them. The only way they can even begin to understand what you are going through is by being open about your experience and pain with CRPS. I have also been open with my peers on what I do and do not like when my pain is brought up in conversations. For instance, I don’t like when people compare pain or ask vague questions like, “How are you doing?” When they really just want to see if I am in any pain. I'd rather they just get to the point!
Most importantly, you have to remember that this is a process. Your friends and family will not understand immediately, and you won’t know how to talk to them right off the bat. It will take time, but in the end, will provide you with more people to lean on.
