Thursday, April 28, 2011
Empathy: Cancer versus Lyme
A couple years ago I flew home from a Hawaii vacation and landed a new symptom: Bell's Palsy. As the plane touched down, the left side of my face was drooping, an ice pick seemed lodged in my left eye and temple, yet my facial skin and half my tongue were numb. I'd never had this symptom before. I was exhausted but couldn't sleep. I couldn't get up the following morning to take my kids to school. I was a sleep-deprived zombie. I was in a ton of pain. I was riddled with fear about my face. At noon, I forced myself out of bed to begin calling doctors. A month later, I would be diagnosed with late stage Lyme Disease.
One of my relatives also flew back from Hawaii that day, too. He was very ill due to chemotherapy treatments for Stage 4 cancer. He read books in a pool recliner during our entire vacation. We were impressed. The morning after we flew back, while I lay in bed with Bell's Palsy, he went to work running a large organization and worked a full day. Everyone was impressed. His family and employees all catered to him.
I called my best friend to tell her about my new facial symptoms. She told me I just need to "think happy thoughts." She severed our friendship that day. I've hardly talked to her since. My medical problems were too much for her.
Last year three family members chose chemotherapy and radiation treatments for cancer. I knew they would temporarily have the awful symptoms I've dealt with for twenty years: exhaustion, nausea, pain, digestive problems, and cognitive difficulties. Unlike my ongoing and unpredictable exacerbations, each of their treatments were acute and usually scheduled. Two of my dear relatives died.
Unlike Lyme, none of my relatives with cancer experienced a lack of empathy in addition to all the other trials they faced. Like others around them, I ran errands for them, attended chemo infusions, did research for them, and offered remedies that have worked for me. Unlike others around them, I did all this for them while I was feeling as crappy as they were.
I've been the patient in an IV room a few dozen times and only once did anyone come with me. (My brother, who was only in town for a day so he had no choice if he wanted to see me.) No one has done research for me. No one offered to do errands for me. No one has sent me a care package. Family members berate me for my "special needs;" others snicker behind my back about my special diet. I even found out that some moms at my kids school were telling others that I wasn't really sick, that my medical problems were designed to get attention. (Hello, anyone remember Mandy from Under Our Skin?)
"I should just shave my head," said one of my dear Lyme friends, regarding the difference between how people treat chemo and Lyme patients.
What she meant is that we are feeling just as bad as chemotherapy patients, yet there is a huge gap in support and empathy. Is it that people can't see how bad we feel on a day to day basis? Why aren't we lauded for keeping up with life while faking that we feel better than we do? We do this for others - to be social. (See my post on the Ginger Rogers Club.) Do our loved ones forget how hard it is for us to keep up with life, every day of our lives?
Is it that cancer is terminal, while most think Lyme is not a fatal illness? (Lyme patients do die of heart failure and suicide.) Is there is no perceived urgency to help us? Have we already worn people out with years of "hypochondriac-sounding" symptoms? Are people wary of being worn out with long-term favors that will never get returned?
Why is quality of life valued less than quantity of life?
Recently, I had major abdominal surgery. This was a scheduled event, self-contained, like a cancer patient's first chemo treatment. I was blown away by friends' empathy and willingness to help manage the many moving parts of my life and the lives of my children. I was frequently moved to tears over their kindness. I sent out a thank you email every couple days naming 15 friends who had stepped up. This proved that lack of empathy around my illness wasn't just me - that people care, but they operate best around scheduled, contained events. They operate best when they can literally see what's wrong.
After a certain point, I felt that people had already done too much. I stopped sending email updates about how I was doing for fear of more friends dropping me like my former BFF. I didn't want to ask for more favors, and the offers slowed down. Due to the Lyme flare-up post surgery, I needed help for much longer than anyone knew, but few were there for me. I was back to being a Lyme patient. I still needed help. Again I struggled alone, only more depressed than ever since I'd been doing so well before the surgery. I was about 20% of my pre-surgery self.
The only friends who really understood my extended recovery were my Lyme friends. Calls, cards, flowers, emails, and unexpected favors kept arriving, long after most of the non-Lyme crowd had forgotten about me. For them and the handful of friends who kept checking in on me, I am forever grateful that their kindness made me feel loved and like I still mattered. Lyme patients need a reason to get up and fake it for everyone else. They gave it to me, and you know what? It's their empathy that has given me the will and courage to keep getting out of bed.