My blog post published by The Mighty a few months ago:
I’ve always been an open, outgoing person. My family and friends know everything about me. If I meet someone new and we hit it off, I’ll talk about pretty much anything. However, when my fibromyalgia got worse, I kept my feelings to myself. I didn’t want anyone to think I was complaining, but most of all, it was difficult to explain. I didn’t know how to express my physical and emotional feelings. I thought no one would understand or care. I also have depression and anxiety. Fibromyalgia may be difficult to explain, but a physical illness can be easier to talk about than a mental illness. Many people are ashamed to talk about mental illness, even with their loved ones. I felt that way at first and kept it all to myself until my invisible illnesses literally became visible. There were days when I walked with a limp, panic attacks occurred in public and in front of family, I had difficulty leaving home, and unfortunately I became too unwell to work. At that point, my immediate family and a couple of close friends were aware of my illnesses, but I still felt ashamed and embarrassed about it all.
The daily struggle I had (along with the typical symptoms of my illnesses) was not having anyone who could relate to my situation. It’s certainly no one’s fault, and I’m glad that many of my loved ones are healthy, but talking to others with the same illness can be therapeutic. The perception of being young is being healthy and active. Typically people around my age (30) are working full-time, have a spouse/significant other, their own home, a social life, and possibly children. Their weekends are always filled with parties, family gatherings, shopping trips, yard work, etc.
My life is completely different. I was young and in pain and I felt so alone, but I knew that I couldn’t be the only one. So, I created a private group on Facebook called “Fibro Fighters Under 40.” I thought making a group for the “younger crowd” with fibro would be beneficial. (No offense to anyone over 40, of course!) Fortunately, I was right. It’s a wonderful group of kind, understanding, and supportive people. It allowed me to talk about fibro and even mental illness more freely and without judgment. I felt like I was able to help others who were in need of support, and there is no better feeling for me than to help someone.
In addition to the fibro group, I began reading more blogs and articles about chronic illness. I was inspired to share my own story to create more awareness and understanding, especially about fibromyalgia, which is often knocked down due to its “mysterious” nature. Until some of my blog posts went public and I read the readers’ comments, I had no idea how many people had lives that mirrored my own. I’m not thrilled with the number of people who battle chronic illness, but I believe connecting with each other is a way to “dull the pain,” so to speak. There are too many people who don’t have support at home and need a safe, non-judgmental place to go. Even if that “place” is on the Internet, it’s a way to exchange stories, symptoms, treatments, and advice. We can support, understand, and relate to one another.
Of course everyone is different and there is no right or wrong in this matter. Some people like to keep medical issues private and only tell their immediate family, others may be more vocal and blog about their experiences. People should do whatever they feel is most comfortable. I wanted to share this because my feelings changed, and both my online support group and writing articles have been great outlets. It has been better for my health to “let it out” than “bottle it up.” It took awhile for me to believe this myself, but I now know that having a chronic illness is nothing to be ashamed of. I didn’t choose to live this way. However, I decided that since I can’t make my symptoms disappear, I’ll work with them instead. I’ll share my thoughts in hopes of reaching people who don’t understand how we live. I’ll continue to support everyone with chronic illness. And I’ll continue to fight like hell.
You can view this post on “The Mighty” here