Last week, I came out of the fibro closet. It took me a year and a half to come out. Sure, I had told a few select people but for the most part none of my friends and family knew.
There are multiple reasons why I did not make it known sooner. Back in my early 20’s, I worked in medicine as a Paramedic. It was a great experience that gave me so much knowledge and confidence that I continue to carry with me to this day. However, at that time, fibromyalgia was even more misunderstood than it is now. Many of the physicians and nurses that I worked with looked down on the disease and many of the patients were seen as drug seekers or burdens on society. One of my co-workers at the time was divorcing his wife that was diagnosed with fibromyalgia. He frequently referred to her as lazy and bi-polar. Being healthy and naive, I believed what everyone was saying about the disease.
The first time my doctor mentioned the word “ Fibromyalgia”, these were the memories that instantly popped in my head. It was a vulnerable time for me. I had just failed four attempts at IVF and was feeling like a failure as a wife. And now, I felt that everyone, including my husband, would see me as lazy and attention seeking. I initially went into denial. I didn’t even tell my husband for the first 3 months. I continued to make excuses until there were no more excuses left. At that moment, I finally told my him. As was his nature, he met the news with great care and sympathy. I realized that I should have never kept the information from him.
Acceptance can be a slow process. I started reading information online but it only worsened the depression. It wasn’t until I borrowed my first book, The Fatigue and Fibromyalgia Solution by Dr. Jacob Teitelbaum , that I said “ HOLY CRAP I have fibromyalgia!”. Everything that he wrote about seemed like he was writing about me. The fatigue, the insomnia and even the chronic sinusitis. For the first time, I felt like I had an understanding and he provided me with the little hope that I needed to be able to take the next step. Six months after that fateful doctor’s visit, I went back to my primary and told her that I thought she was right and the wheels were set in motion.
The second person I told was my mother. My mother was no push over. Growing up in a Catholic household, she was a master in the art of the guilt trip. I very rarely missed a day of school and her most famous phrase was “suck it up, buttercup”. I credit her for the strong, well-educated woman that I am today. The reason I told her was that several of the drugs that I was experimenting with are drugs that my father is also taking for his Parkinson’s disease and I wanted to know how they were affecting him. Despite my very independent nature, we began communicating on a regular basis. Turns out that coming down with a chronic illness can bring you much closer to you mother.
The next person that I had to tell was my boss. This was necessary as it was becoming evident that I was not able to perform some of the physically demanding aspects of my job. As she was not forced to be sympathetic to me by marriage or blood relation, I grew concerned of informing her of the news. Fortunately, this was my first lesson that fibromyalgia sufferers are everywhere. My boss was very understanding as she had a friend with fibromyalgia. That day, we began to alter my work schedule.
And thats where I stopped for the most part. Occasionally, someone would come up to me and ask me if I was ok or bluntly ask me if I was “dying or something” like my technician did after I had returned from another doctor’s visit. If I felt comfortable with them knowing, then I would tell them and ask them to keep it secret. I treated my diagnosis more like an STD than a chronic pain condition.
More time passed and it became harder to keep it a secret as more of my friends were wondering why I had become so anti-social. I was worried that they might think that I was being a snob and didn’t want to hang out with them anymore. However, I had a fear that people would start treating me differently if they knew. I just couldn’t bring myself to being open and risk being treated like I was a burden.
I literally just woke up one morning and decided to do it. I put it out there on facebook. Well it didn’t go as I planned. I hoped that I would just put it out there for people to read, they would see it and go about their regular daily business. Instead I was showered with love and compassion from so many friends and family.
The moral of the story is take your time. Don’t feel like you need to rush to tell the world. But when you do, there will be plenty of symptathitic people out there for you. There are so many people out there that suffer from fibromyalgia that it is inevitable that someone knows someone, that knows someone, that knows someone with fibro. There is so much more understanding of the subject than there was even 5 years ago. Hopefully with more voices out there supporting the cause, we can find better treatments or even a cure for this painful and exhausting disease.