As the familiar words of the Mi Shebeirach floated through the room, I wondered what Debbie's intention was behind this song--maybe she wanted to normalize talking about illness because she was sick? Maybe she just thought the words were beautiful? Those are questions we will probably never know the answers to. This being said, deliberating on Debbie's intentions, her kavanah, if you will (the Hebrew word for the spirit or intention behind something), got me considering why I choose to talk about having a chronic illness--or more often write about it as you can see if you have read any of my other blog posts. I came up with two reasons why I talk about being sick, and why it's important to do so.
One night, in a room full of friends whom I had been close with and known for years and one person I didn't, I experienced something I hadn't ever experienced before. This woman, whom I had never met, and at that point, I don't think I even knew her name, introduced herself as a "spoonie" (If you don't know what that is, see this wikipedia article). In that moment, I both high-fived her while the rest of the room looked at us with bamboozled looks on their faces, and I no longer felt alone in being sick--even before I actually had a conversation with her. That night, at least to an extent, changed my life because I had met someone who was also open about being sick, and I no longer had to feel alone, a feeling I had been experiencing pretty much 24/7 over the previous two weeks. She inspired me to start talking about being sick even more openly in my everyday life, not only online, and since then, I have had many of those experiences of camaraderie or anti-loneliness often in the other direction as well with people whom I didn't even know were sick coming up to me and telling me that my writing about chronic illness made them feel less alone.
Loneliness is one of the least talked about and yet most significant "symptoms" of having a chronic illness. Pain itself is isolating; Elaine Scarry wrote, in her book, The Body in Pain, that "to have great pain is to have certainty; to hear that another person has pain is to have doubt." In our social media filled world, we don't talk about our personal struggles that much. Chronic nausea or back pain is not something that one would usually post about on Snapchat or Facebook, or something that I would divulge in an interview for a study abroad program (Shout out to the whole staff at the Nachshon Project for being so supportive and helpful when it comes to me being sick). The lack of media about chronic illness and the lack of conversation about it in general circles causes extreme loneliness and often even depression in people who struggle with chronic illness.
Sharing my story may be scary because I can never truly know how people will react (It feels a heck of a lot like "coming out," an experience I wrote about in this blog post), but talking about it lets other people in. One of the things that I regret is not talking about being sick right after my diagnosis because while it would have been the hardest time to talk about it, I was also incredibly lonely during that time. Talking about being sick helps me, or any other person with chronic illness to feel less alone. Since that night this past summer, I have had way more conversations with other chronic illness warriors and joined a lot of facebook groups for people with chronic illnesses, and those experiences have made me feel so much less alone. Being chronically ill, whether you identify with the spoon theory or not, puts you in a sort of club that you don't want to be in, but you can still be grateful for the other people fighting besides you. And my openness has allowed me to provide the experience that the night last summer provided for me: it has allowed me to help people learn how to help me, and it has aided me in making others feel less alone.
The second reason that I talk so openly about being sick is because I hate the way that we talk about illness, and I want to help people get better at talking about illness. There is no Hallmark cards for people who won't be "getting well soon.". There are very few movies or TV shows out there that accurately depict people with chronic illness. And because there's so little information out there (there is quite a bit on The Mighty if you're interested), when my friend hears that I am chronically ill, they don't know what to say. And that's okay. No one taught them how to help people with chronic illness, so I try to. Most people don't even have the vocabulary to talk about chronic illness. Since I wrote my most popular blog post about what not to say to people with chronic illness, I have actually had people correct themselves in front of me based on the suggestions I provided in that blog post, and I have also had people, sometimes people I didn't even know that well who are friends with me on Facebook, come up to me and thank me because my suggestions have helped them or helped them to talk to their friend with chronic illness. Those conversations are what makes talking about being sick worth it. If I can help one person, I have succeeded in my goal.
The bottom line is this: I am open about being sick because it allows me to send the message to people who are struggling that they are not alone, and it allows me to help those who do not struggle with chronic illness learn how to help. Before that Debbie Friedman Memorial Concert, I had never considered the inclusion of the Mi Shebeirach in the service to be much like my first blog posts about being chronically ill, but the two things both have the intention, or perceived intention, of making it okay to talk about being sick and of making us all feel a little less alone in our prayer for healing.
