I’d like to think that most people have good intentions when they provide unwanted (and typically unneeded) advice. Whether it’s suggesting snake oil cures or quitting school or how many children I should have, it gets old quickly.
The bottom line is, I might have an unpredictable body, but I know my body — and my life — best.
When I was first diagnosed with rheumatoid arthritis, my rheumatologist was adamant that I quit graduate school and move home to live with my parents. “There’s no way you can be successful in your program while managing multiple chronic illnesses,” he said.
I didn’t listen, and ultimately I did complete my program. He and I came to an understanding that without school, my life didn’t feel like my life anymore. To pack up and leave would seal my fate more than trying to make it through.
As I struggled to maintain being in a PhD program while living with multiple chronic illnesses, some people thought that being sick would have a positive impact on my career. One professor told me, “You’ll be a better sociologist because you’re sick.” I was stunned.
While this was the opposite of my rheumatologist telling me to pack up and move on, it was no less hurtful or shocking. It’s no one else’s place to assume how my life will be impacted by challenges they don’t fully understand.
Someone I work with freaked out when I stated that my husband and I want to have one child and see how that goes. The response was, “How could you do that to your child? Why would you want them to grow up alone?”
My response? “I’m not having this conversation.” Why? Because it hurts. Because it’s painful. And because it’s really no one else’s business what the composition of my family is, or why it is that way.
Because of my chronic illnesses, we don’t know how my body will react to pregnancy. My illnesses could get better, but they could also get worse. So it’s just not a good idea to get my hopes up, and to have the expectation that multiple children are in our future.
It seems that the moment I became chronically ill was the same moment that made people think it was OK to offer me unsolicited advice. Whether it comes from doctors, educators, co-workers, friends, or family, unwanted advice is, at best, annoying, and at worst, hurtful.
This puts those of us with chronic illnesses in a difficult position. Do we simply smile and nod, knowing that we have no intention of listening to the advice that’s being given? Or do we clap back and tell the advice-givers to mind their own business?
As much as I’m all for smiling and nodding, what frustrates me is that people don’t realize that their judgments can be hurtful. For example, without knowing my situation, my colleague basically told me that I’m a bad person for potentially making my future child an only child.
But my colleague doesn’t know everything that has gone into making that decision and why. They haven’t been part of the conversations with my husband about whether we would want to have a baby at all costs, even if that meant losing me.
It’s very easy to pass judgment when you don’t have the knowledge that went into making the decision. And even if you did, you still might not fully understand.
People may not agree with the choices I make, but they don’t live in my body. They don’t have to cope with chronic illness on a daily basis, and they don’t have to cope with the emotional toll of being told you can’t or might not be able to do something. It’s important for those of us who live with RA to feel empowered to make our own decisions and to advocate for our own choices.
Leslie Rott Welsbacher was diagnosed with lupus and rheumatoid arthritis in 2008 at the age of 22, during her first year of graduate school. After being diagnosed, Leslie went on to earn a PhD in Sociology from the University of Michigan and a master’s degree in health advocacy from Sarah Lawrence College. She authors the blog Getting Closer to Myself, where she shares her experiences coping with and living with multiple chronic illnesses, candidly and with humor. She is a professional patient advocate living in Michigan.