Send Me More Stories About Chronic Illness
Sitting on the floor in my parent’s basement staring up at the stairs, I wondered how I would ever climb them. It felt like an appropriate metaphor for the way my life had been going the last few months. Stuck in the dark, in pain, alone and scared. Those stairs stood between me and the only thing that had made any dent in the debilitating pain that had taken over my body: my medicine. Trying to convince myself to stand up, I imagined doing it. Up the stairs, into the kitchen, turn right, open medicine cabinet, relief. I didn’t get up though, because that voice that had been growing inside my mind for the last three months took over. The voice that told me I was worthless because of my illness.
Two months before I had been misdiagnosed with Rheumatoid Arthritis because of joint pain. However, when I developed my cognitive symptoms—confusion, forgetfulness, anxiety—the doctor told me it must all be in my head and I needed to see a psychiatrist. I knew there must be something else going on. Like Captain Ahab chasing his white whale, I spent the next two months obsessively searching for an answer.
So when a doctor finally said fibromyalgia, the relief I felt was overwhelming. But my excitement was short lived. I asked the doctor if he could explain to me what fibromyalgia is. He said “kind of.” He told me that we could manage the pain but that no one really knows why my seemingly healthy body suddenly doesn’t work the way it should. “Some of my colleagues don’t even believe that it exists,” he said to me, further explaining that a colleague of his said it was just another name for hypochondria.
Being diagnosed with an illness that even the medical community sometimes dismisses can be incredibly isolating.
Being diagnosed with an illness that even the medical community sometimes dismisses can be incredibly isolating. I stopped telling people I had it after a friend told me they had heard everyone with fibromyalgia was nuts. I started attaching labels to myself: crazy, hypochondriac, lazy. Every day I told myself what a burden I was on those who loved me, and I began to push even my closest loved ones away.
The author and her niece, Gracelyn.
By the time I found myself at the bottom of those basement stairs, looking hopelessly up at painkillers beyond my reach, guild and blame had become the main way I communicated with myself. I was so busy bullying myself that day, I didn’t notice my little niece making her way down the stairs to me.
Gracelyn is two years old. She has a button nose, hair so blonde it’s almost white, and the sweetest face I’ve ever seen. In my biased opinion, she is perfect. By the time she was halfway down the stairs, she was already happily shouting my name.When she reached the ground she ran to me and threw her hands around my neck.
In all honesty, I had been avoiding her lately. I guess out of guilt, because I am not as fun as I used to be: Our regular dance parties in the kitchen are now torture to my sore knees. So I distanced myself from her, as I had with most of the people in my life. Her hugs are usually quick, two seconds and she’s off busy with other toddler things.
That day, however, she didn’t let go. She hugged me as tight as her little arms could. It was the most significant hug of my life.
“Up,” she said, pointing up the stairs, demanding yet adorable. I didn’t want to go—the pain was too much–but I couldn’t say no to her.
I got up. It felt more like scaling a mountain than a set of stairs. I wanted to give up multiple times, to slide back down into the basement, but every time I felt myself giving up, her little fingers tugged my hand upward, giving me the determination to keep moving. With her short little legs climbing at the same pace as my pain filled body, we slowly made our way to the top.
No one had sent her. No one knew that I was crying silently downstairs. I had been avoiding her, yet she still came and found me. I wasn’t capable of doing many of the things we had done before, yet she still wanted to be with me. I had an illness, yet she loved me all the same. That day, she pulled me out of darkness, and up into the light both physically and emotionally. And I realized: If that perfect little girl loved me, then I must be worthy of love.
I realized: If that perfect little girl loved me, then I must be worthy of love.
I’m not going to say I had this one experience and magically came to terms with my condition. It’s hard to learn to yourself again when you have a chronic illness, and progress is gradual. If I’m honest, I still have a hard time loving myself sometimes. Now though, when I have dark thoughts, I remember that a pure and perfect child loves me. It makes it easier: easier to be kind to myself even when my pain-racked body wants to believe it’s not worthy of love. And that’s where change comes from, isn’t it? Doing things even when we don’t feel like it.
Gracelyn probably won’t remember the day she got me to climb those basement stairs when she grows up. She might not even remember it now. But I’ll never forget it: the day a two-year-old helped me realize that chronic illness does not take away my worth.
