Diagnosed with rheumatoid arthritis (RA) at the age of 22, after years of symptoms and misdiagnoses from the time I was six years old, I’ve spent most of my life trying to see the silver linings of having a chronic condition.
For instance, contending with the challenges of a painful, degenerative disease without a cure, one has to develop fierce determination to make it through a day, much less the duration of a flare. I’ve developed courage and endurance. Furthermore, because of this pain I do not take a good day for granted; instead I cherish the times when I’m not in pain and feel gratitude for my body when it can move and fully participate in the world. I’ve even reflected on the lessons I hope to teach my children in raising them while facing the hurdles RA presents.
“I may have RA, but it does not have me”
In the long run, I will only stave off depression and continue working toward my goals if I keep this disease in perspective. For the most part, I box this disease in; I may have RA, but it doesn’t have me. More days than not, I’m able to do this. I’m able to live my life and appreciate it, in spite of this chronic condition.
And then . . . there are the days when I can’t.
There are times when I cannot muster a positive spin, a silver lining, or a life lesson.
“Some days, I have only hate for RA.”
During the summer I was going through a flare. After several days of intense pain, where every movement was a challenge, I decided the only way out of the downward spiral was to push myself up and get some exercise. The only form of movement that seemed potentially bearable was swimming, as water supports the weight of my body off my joints.
I have both a pool in my backyard and two small kids. This means that I can swim virtually any time I want in the summer, but also I’m rarely able to swim without the company of children. Before heading out to the pool I warned them that my body was in a lot of pain and that they couldn’t touch me in the water, much less jump on me or try to roughhouse.
When we got in the pool I repeated my warnings, and strung up a lap lane rope to separate the shallow end from the deep. I told them they needed to stay in the shallow and I would be on the other side of the rope, and this would keep them from bumping into me.
For about 15 minutes, this plan worked. I was in too much pain to swim laps, so I treaded water and then stood where the pool was up to my shoulders and slowly moved my limbs through the resistance of the water. Although painful, it felt good to move and to have the water support me, and I started to relax.
Just then, forgetting my earlier warnings in the living-solely-in-the-present-moment way of young children, my five-year-old swam up to me, pulled his legs up, placed his feet on the trunk of my body, and, before I had time to react, pushed the weight of his body off against me.
“I came undone. The pain upended me.”
Shooting, searing, burning pain ripped through my hips, down through my knees, and up into my shoulders. It stole my breath, making it hard for me to get any air. My brain reeled in the enormity of the pain surging through my body.
I typically try to maintain my composure in front of my kids, but the pain was so intense I was weak against it. I made my way the few feet to the side of the pool and hung onto the cement, sobbing without sound. Feeling like my body was breaking in two, emotion spewed forth and I couldn’t hold it back. Perhaps had the pain hit while I was in a stronger place I might have been able to keep the sobs from heaving through my chest, but I’d been worn down by the relentlessness of the flare for days, and all I could do in the face of this increase of pain was cry.
My son, having kicked against my body out of playfulness and completely without any maliciousness, was mystified and devastated to see that he’d affected me so entirely. He got out of the pool, grabbed a towel for cover, and hid under it, emitting sobs of his own.
Fortunately, at that moment my husband came home from work and entered the backyard. He checked on our son, then affirming that he wasn’t hurt, came over to me.
I watched my beautiful boy crying for the pain he’d inadvertently caused me, and my heart hurt nearly as much as my body. My husband helped me out of the pool, into the house, and assisted me in replacing my wet swimsuit with dry pajamas. He put me into bed, got the pills I requested, and went to tend to our son.
I lay in bed, the sobs now gone, leaving behind a slow, steady stream of quiet tears. I cried for the pain I was in, for the fear of not knowing what lay ahead, for the 39-year-old body I wished I had instead of the broken one I was in. I cried for my darling son and his hurting heart, having a mother so damaged and vulnerable that she could be reduced to tears and anguish with only a push. I cried for the years of pain behind me and the years of pain still to come.
Eventually the tears and the pills and the heated mattress pad swirled around me and carried me off to sleep. I couldn’t fully release the pain, but releasing the emotion exhausted me enough to drift away from consciousness, mercifully.
For the long game, we must stay strong and positive if we are to have lives worth living in spite of this disease. Yet every once in a while it’s okay to break down, to feel vulnerable, and to allow oneself to hate this awful disease. Sometimes an allowance of weakness, ironically, is what allows us to greet the next day with grit and fortitude.