Zebra Seeking Spoons

Living every day with a chronic illness is definitely a challenge. While I do have my occasional good days, most of them are mixture of exhaustion, pain, loneliness, and walking around in a fog. One of the things that keeps me going is being able to help advocate for other people in the community on a similar journey. Since my diagnosis I’ve done a lot of research and self advocacy to create my own treatment team and I am now blessed to have resources that many people do not have reaching out and helping others is one of the things that lights me up inside. Right now I’m really excited because for the first time I’m working to bring together a group of local zebras so that we can have a person support group that is accessible to all of us. This is something that I’ve been needing and craving for quite some time. I have a lot of online support, but nothing compares to the Real thing. It sparks energy and joy in me as I go through this process, finding others to add to the group and problem-solving how to make it work best. Right now we’re thinking it’ll be at my house where people can bring their own comfort items (pillows or blankets or chairs) or just lounge out on the couch or the bed. One of the reasons that in person meet ups for Ehlers-Danlos Syndrome often don’t often happen is that many of us have unchecked chronic pain that make it hard to meet up at a café or a restaurant, but somebody’s house is definitely doable. To be able to look somebody in the eye who understands what I’m going through is something that I wish I had a daily basis. So many of us that live with this disease feel utterly alone and we’re not. It’s classified as a rare Disease but many more people have it than any of us realize. I can’t wait to get some zebras a hug sit down and start talking sharing! I’ll keep everyone updated.