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Finally, I’m here. I’ve arrived!
When I was first diagnosed with HIBM (or as it’s now often called, GNE myopathy) almost 10 years ago, I couldn’t even say the name of the disease out loud. I could barely accept that I had it. I didn’t want anything to do with it. I didn’t want to read about it, I didn’t want to talk to any other patients, I didn’t want to attend any fundraisers and I most certainly did not want to meet any other patients. It was all I could do to cope. I was barely hanging on. It was all too much. Too scary. Too painful. Too real. So I didn’t push myself. I went at my own pace. I knew it was to the dismay of some loved ones who thought it would benefit me to reach out to other patients for support. Especially those who seemed to be doing quite well living with the disease. But I wasn’t ready. I admittedly felt a bit self-conscious of my process. It seemed that other newly diagnosed patients were able to jump right in and access any and all resources that were available to them. But I wasn’t.