I just attended my first Ankylosing Spondylitis support group meeting. For the first time in my health battles, I walked into a room and immediately felt comfortable. I wasn’t sure if it was the strong feeling of hope from the people in the room or if it was because I knew every person attending really knew how I felt. I didn’t have to hide behind my smile. I listened to the experiences of each person and found myself constantly nodding throughout with a…”that happens to me too” thought. I sat in astonishment that these remarkable warriors were so brave and positive about their hopes for the future. I have met so many amazing fellow AS’ers through the web but to actually “see” others and know they are just a short drive away is a new and exciting experience.
When it was my turn to speak I was going a mile-a-minute. Just jabbering on about my diagnosis, meds, doctor, and husband. I could of talked all day. Those that know me well know that I am a “talker”, but this was different. There was a new found enthusiasm in my voice. These people “knew” me. That what I was describing was also their unfortunate reality. I had so much I wanted to share. I walked away that day feeling ten pounds lighter after letting out my thoughts that have been building for almost three years.
We talked about our support systems and most attendees were just as blessed as me to have an amazing loved one to help them along the way. My heart broke for one person though. Their spouse was far from supportive. As they shared the degrading remarks and actions the spouse made daily to them tears began to fill my eyes. I hope that after our meeting that this person realizes that they are not alone in their fight and there is positive support out there. I selfishly get aggravated when I think of my own family and friends that have pulled away through my health struggles. Now more than ever, I realize that just one person, whether blood or a brand new friend who offers support, means so much. We don’t have the energy to try to “prove” our disease and we should never have to. If they are really, truly part of your support system they won’t need you to explain. Face-to-face, the phone or via the web support is there. Please know you have the courage to pursue it.