There is no vulnerability like being hooked up to an IV pole, waiting for hours as it drips a certain amount of medicinal toxin into your body. The medicine is good: it makes my body stop attacking itself. The medicine is bad: it makes my body extremely vulnerable to viruses and infections. The worst time for me to catch something is in the days immediately following an infusion, when my immune system is at its weakest. Conversely, I also have the most energy and feel the best in the days immediately following an infusion.
To sit with a needle in your arm for hours, knowing that you need this medicine in order to function in daily life, is its own kind of vulnerability that comes chronic diseases. It means the doctor has determined that the benefits of the medicine outweigh the side effects. Over the 17 years I’ve been treated for Rheumatoid Arthritis, I’ve had hair loss, hair turn curly, a sulfur smell to my body, night sweats, mouth sores, and developed lactose sensitivity. Early on, the nausea was so bad that I lost weight from a size 12 to a size 6 because I was forcing myself to eat, knowing that I needed to do so even while I really didn’t want food anywhere near me. I’m on antibiotics about twice a year for an infection and a course of steroids about once a year to help me overcome low energy levels. The physical distancing and masking policies of COVID-19 significantly reduced the number of viruses brought into my house and, thankfully, that number has stayed low since those policies ended.
Nonetheless, I do not let my Rheumatoid Arthritis slow me down much. I play sports with my son – until the point that something hurts, or I’ve slightly injured myself (like tripped) and then I’m done. It will take me too long to recover. Recently, I tripped and instinctively forced myself into a roll to protect my joints. I wasn’t hurt at all and an observer who checked on me was very impressed with my roll. He said many athletes have not learned to fall or roll with such grace. I said I can’t afford to get hurt.
This is my physical vulnerability, and I know there are many other kinds: others who are immunocompromised, persons receiving chemotherapy, persons with allergies so severe that they much always carry an epi-pen. Some have visible vulnerabilities that cannot be hidden. Many of us with chronic illness have invisible vulnerabilities that you’d never know if we didn’t share with you.
One of the lessons I learned when first learning to manage my disease is the grace that comes in asking for help. My godmother, who lived with a chronic disease her entire life, told me, “When you don’t ask someone for help, you deny that person the opportunity be Jesus to you.” Sometimes the best way to help someone is to let them help you. Many of us want to be helpful, but don’t know how. Asking for help via a specific concrete request tells us how we can be helpful to you. Do you need someone to vent to? Do you need a shoulder to cry on or a hug? Do you need someone to go with you to a doctor’s appointment so that someone else also hears the information shared and might have more presence of mind to ask questions?
Being vulnerable, allowing someone else in, provides that person an opportunity to show grace to you. We generally don’t want pity, but to be understood and our feelings validated. When showing our vulnerability, we run the risk of being told some version of “Get over it. Pull yourself together.” The truth is that when we share our vulnerability, we’re looking for a safe person to be vulnerable with and asking if you are that person. I don’t share my story for pity or for a pat on the back. I share my story to increase understanding of daily life with a mostly invisible chronic disease. I share my story to build a community where it is safe to be vulnerable. I share my story because it’s my story to tell. We all have a story related to vulnerability. What’s your story?