How does pain affect your independence? Do you push yourself too hard? Do you hide the fact that you're in pain? Is it hard to ask for help?
I was invited to address these questions, along with several other people who blog about pain, by HowToCopeWithPain. To see all the other posts, go to the HowToCopeWithPain.org/blog.
Since July 4th is a day dedicated to the idea of independence, for patients it is the perfect opportunity to explore the intersection of pain and independence. I’ve had an on again, off again relationship with pain for over a decade now. I grew up with the pain of the broken bones high doses of steroids caused, the pain of coughing so hard my throat became raw, and the pain of tendonitis and ailments like that. But these were temporary dalliances, not full-blown affairs, and I treated them as minor disruptions.
It wasn’t until I developed chronic fatigue syndrome (CFS) in high school that our relationship was sealed in a more permanent way. Unlike the temporary pain of a broken wrist or a reconstructed ankle, my muscle and joint pain were always present, loud and strident at times, quiet and unobtrusive at others, but always there, lurking in the shadows and begging to be noticed.
Throughout college and into my twenties I handled my pain by pretending it didn’t exist, the same approach I used to deal with my respiratory conditions. The worse I felt, the harder I pushed, as if taking on too many commitments somehow proved I wasn’t sick, I didn’t have pain, and I didn’t need help. It’s no coincidence that the years of my life when I was the most seriously ill and in and out of the hospital frequently corresponded with the years I was the most overcommitted.
This cycle seemed destined to continue, because slowing down would mean confronting the true nature of my relationship with chronic pain.
And then two things happened within a few months of each other, two life-altering events that would have remained life-altering on their own but when combined, became a force too powerful for even my significant powers of denial to overcome: I met my future husband and my adrenal system decided to shut down. A lifetime of steroid treatments for my lungs had caught up with me, and when the toxic drugs that had mimicked the body’s hormones for so long were finally tapered off, my body didn’t know how to make adrenaline anymore.
Suddenly I had two competing relationships to juggle, one with the man I loved and one with a body racked with more pain and fatigue than I’d ever known. At some points, even moving my lips to speak was difficult, and the slightest brush of a finger on my leg muscles hurt. I’d lie awake night after night, desperate for sleep to cut through the haze of exhaustion but unable to rest because of the pain.
On the one hand, it was no longer physically possible to ignore my condition. When you can’t raise your arm to brush your hair properly, the truth pretty much slaps you in the face. Yet because I was spending more and more time with my then-boyfriend John, it was impossible to ignore my situation on so many levels. I was too tired to drive. I was too weak to carry my grocery bags. I was in too much pain to follow through on dinner plans.
Like any sane, compassionate person, John wanted to drive me, carry my bags, and pick up take-out when I couldn’t leave my apartment to go on a date. He also wanted me to cut back on my freelance jobs and make decisions about my schedule that would give me a fighting chance at feeling better. But at first, I eschewed his offers of help, I dragged myself to events I had no business going to, and I wouldn’t accept the fact I had to quit some of the jobs I really loved. I also didn’t want to admit how much my pain and fatigue affected John’s life.
I didn’t want our relationship—or any relationship in my life—to become about doing things for me, not with me.
And then I started to see that in refusing to accommodate my pain in any way or let people help me now and then, I was allowing my illnesses to define my personal relationships. I thought I was simply ignoring my pain, but in fact I was giving it center stage in ways both unproductive and damaging. My time with John was increasingly tinged with symptoms and setbacks, and it didn’t have to be that way as much as it was.
Finally, I became more comfortable acknowledging the long-standing bond I had with chronic pain. Instead of regret, I felt overwhelming relief. I stopped being stubborn. I cut back on my schedule so I wasn’t quite as tired and overworked. I rested ahead of time when I knew I had a social engagement or physically draining activity planned.
More than anything, I realized the freedom of choice: it was far better to ask John for help when I knew I really needed it than it was to be forced into accepting help when I had no other alternatives.
I’m not sure how much longer I could have denied the limitations of chronic pain if all these events hadn’t transpired simultaneously, but I am grateful for the timing. I thought I’d sacrifice independence if I abandoned denial but it turned out to be the other way around. When I let go of denial, I had far more control over my health as well as my relationships.