What Happened When I Tried to Initiate Conversations About My Health

This past year has been exceptionally difficult for me health-wise. Probably the most difficult since a horrific accident I suffered in 2014. It has brought new challenges and diagnoses, along with an increased level of pain, isolation, loneliness, depression and fatigue. I lost friends, grew distant from those I love, dropped my hobbies and took up residence on my couch watching Netflix. Not even the beautiful weather could draw me out of this hole of despair I had placed myself in. I have spent the past year being a hermit, so as the summer turned to fall and a brand new treatment provided me with some precious energy and a little relief, I was ecstatic to begin seeing friends and family again. Having some social life and feeling productive, a sense of normalcy, albeit the illness kind, returned to my life. Long intro, but, I felt I needed to give some background before I tell you what happened next.

I entertained some friends this weekend and had a very open and honest conversation with one of them regarding my health. She prefaced it with “I don’t want to pry, so I understand if you don’t feel comfortable answering, but…” And proceeded to ask me a number of questions to better understand what I had been facing. We didn’t get into any horrible details, but it was a great conversation and I left feeling like she better understood me and my chronically ill life. It left me thinking of the last time I had an honest conversation about my health with other friends or family and I wracked my brain for hours. I haven’t had a conversation with many people about these new challenges in months. I’m not even sure the majority of my family or friends know what I have been diagnosed with or why I cancel plans more often than I would like to admit. So, doing what all millennials would do, I took to Facebook and put out a request that anyone could ask me anything regarding my health conditions or my life being chronically ill, via comments or private message, in hopes I could start some good conversations. I figured since she had questions, others probably did, too and maybe they shared her sentiment of feeling like they were prying by inquiring.

To my surprise, my post was met with only some likes, heart emojis, prayers, and no questions or messages. I thought I was doing the right thing by opening up and trying to start a conversation, but, I instead felt a new level of isolation and loneliness. Likes and hearts don’t do a whole lot to pick me up. I truly wanted to start a dialogue about my life with chronic illness and open a door that some may have thought was shut, as evidenced by my friend’s insistence to explain that she wasn’t trying to pry by simply asking me what was ailing me. I was a little hurt by the lack of response and also a little disappointed. I turned to my Mighty community to see how they would take it and after some good conversation with some fellow writers, here I am. Even though I opened the door, some people still may not know they can walk through. Chronic illness is a taboo and misunderstood topic. It involves hard conversations, awkward questions, learning new things, broadening understanding and genuine curiosity. Maybe that is where my request fell short. Maybe I underestimated the curiosity of my loved ones, or overestimated their comfort in asking these questions. Either way, I was left feeling a little defeated in my efforts and sought a way to better initiate this conversation with anyone who may have questions.

The moral of my story is this: I am an open book, but, I typically only let people see certain chapters unless I am directly asked about others (thanks to my Mighty pal, Megan, for the great analogy). I try to be as honest as possible, but, I sometimes still hide the truth about my life while ill. But, I am trying to be better at being open. Better at explaining my conditions in layman’s terms and being more receptive to questions about my health. So, if you are ever wondering, please just ask. It might be awkward, but, that’s OK. It won’t offend me if you ask questions about my conditions or my feelings surrounding them. My passion for writing comes with my motivation to further understanding about life with chronic illness and I realize that I cannot contribute to this understanding if I, myself, am not open to these conversations and questions. So, I opened the door and this piece is to invite you, any of you reading this, inside. Healthy, chronically ill, undecided, curious, nervous and everyone in between. If you don’t know or want to know, just ask. I promise to be as open as possible with you and explain everything I can.