By Nicole Bolger
My husband was diagnosed with dermatomyositis in March 2007. When he first started getting tired, we thought it was from stress and long hours at work. When he started getting strange reddish-purple patches, we thought it was just a rash or eczema. When he started having trouble lifting his arms, getting out of chairs and climbing stairs, we knew it was something much worse.
The week my husband was admitted to the hospital for muscle biopsy and diagnosis, we were overwhelmed with medical terms and information. Tours of medical students were brought through his hospital room, and we spent a good part of our time spelling the name of his disease (d-e-r-m-a-t-o-m-y-o-s-i-t-i-s) to friends and family. The learning curve was steep with months of routine weekly doctor visits to rheumatologists, neurologists, gastroenterologists, physical therapists and speech therapists. We read everything we could find on Internet discussion boards and health sites and in medical journals. Sometimes, we pointed out to my husband’s doctors new research and treatments they didn’t yet know about. We were very informed about his disease, and as my husband started to respond to treatment and medication, we thought the hardest part was over. How wrong we were.
Living with a disease that has no cure is not an easy thing to do. Aside from the physical challenges (and those are many), the daily emotional grind of chronic illness wears you down. Years go by, and you still ask yourself the same question that you did the first day: “Why?”
There is no question more painful or useless than “Why?” It keeps you in the past. It keeps you in anger. It keeps you powerless. The day I started the support blog, Myositis Colorado (www.myositisco.wordpress.com), was the day I stopped asking “Why” and started asking “How?”
We have participated in the myositis community since my husband was first diagnosed. We joined the local support group, we’ve gone to the medical conferences, we’ve kept up with the discussion boards, we’ve “liked” the myositis pages on Facebook, and we’ve subscribe to the newsletters and magazines. But we did all those things from the sidelines, never really getting in the game. It wasn’t until September 21, 2012, on National Myositis Awareness Day, that I got up the nerve to put our own story out there.
When I started blogging, I was scared out of my mind. Would people want to read what I have to write? Who was I (a caregiver) to write about a disease I have only by association? What if I can’t find enough topics to write about? How much time is blogging going to take out of my life? Would it even be worth it?
Here are the answers I’ve found to all those questions: Our blog is about us, but it’s about everyone else, too. A blog is a voice of one for the many. I am a caregiver (like many others) who needs to tell my story about the disease that has changed my life. Life is the topic, and everything in it. The time is well spent, and I’m happy to help people in whatever little (or big) ways I can. Yes (yes a thousand times yes), the blog is worth it! It has changed me. It has changed my world.
Mahatma Gandhi said: “Be the change you wish to see in the world.” Today is the day to stop asking “Why?” Get involved. Start a blog. Shout your story from the rooftop. We can’t wait to hear what you have to say.
Nicole Bolger lives in Highlands Ranch, Colo., with her husband and son. She is a proud caregiver and writes the blog titled Myositis Colorado.