I was talking to a good friend who also has RA. I mentioned a big decision I made regarding my career and the feedback I had received. She said, something like “That is such a compliment to your abilities as a normal person”. Hmmm….
It sounded strange, but I knew exactly what she meant. My normal life isn’t blogged about because it’s mine and kind of unremarkable. I don’t blog about how much I love my career, about my love of books that help me escape my crummy disease, my social life that has dwindled, or my family. I blog about life as a person with rotten, horrible, no good diseases. I blog about living life as a sick person, I blog about my advocacy with IFAA, and I blog a little about caring for my sick pets, too.
I’ve been leading two lives. By day, I’m a speech-language pathologist who loves working with individuals with communication needs. I get along well with my colleagues and I love my what I do for a living. I also have really great friends and family. My best friends are also speech-language pathologists and special education teachers. We have so much in common and a long history of friendship, but talking about my illness is not always easy. My family is my support system, but sometimes it is just too hard to see/hear people I love feel sorry for me when I discuss how my body is feeling. My family and friends are wonderful, but their understanding of living with a chronic illness is limited because thankfully, they don’t have to live with it. So…
…in 2009, I began looking for other people like me via social media. I found many like minded people on Twitter and Facebook. I began getting involved in movements and awareness projects and soon my other life as a Patient/Health Advocate was born.
In this life, no one feels bad for me when I vent about flaring. People understand the drugs that I take and the side effects I experience. I found understanding with strangers in a similar boat as me. I help others and vice versa. I read a meme the other day that says, “I am friends on Facebook with people I know in which I have very little in common. Yet I know many strangers on Twitter in which I have a lot in common.” Social media made it okay for me to develop my “patient life” because I was no longer alone in my struggle.
Finding others spoonies has been a main factor in helping me deal with my diseases. I can read about John Doe struggling with turning on the spigots in the shower, and Jane Doe fighting with her insurance to get approval for her new meds and it makes me feel “normal”. Strange, right? Or the new “Normal”? Some of these “strangers” have made the transition to friends. Friends who have a common goal to make a difference in the lives of rheumatology patients. Friends I can vent to about my life with autoimmune arthritis. Friends who just “get it” when others don’t. The #rheum community is really amazing in it’s support and knowledge. Patients who make it easier on the rest of us going through life in chronic pain. Of course there are some antagonists and bullies, but I keep them as strangers and limit my time exposed to them. People in my “patient” life know little about my “normal” life and vice versa. My friends and family probably don’t read my blog or see the work I am doing unless they follow me on social media. My “selfs” are very separate.
I have no desire to integrate these two lives, but I always try not to neglect one for the other. At the end of the day, being a patient simply sucks. Being able to share a joke/rant/comment/question with a fellow spoonie every day, makes it a little easier to handle. I know full-well that being a chronic rheum patient is can be full-time job. I know so many amazing patient advocates who are able to be professional patients and I admire them greatly. That life just isn’t for me, right now. It may be what the future holds for me. Until then, I’ll keep drawing strength from my fellow spoonies while living my version of normal.
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