The Emotional Side of Physical Pain
Chronic pain is so hard to explain to those who don’t live with it. It’s different from any kind of pain I felt before I got ankylosing spondylitis (a form of axial spondyloarthritis) because it is so unpredictable and relentless. But another hard-to-explain aspect of chronic pain is the emotional side that comes with it.
Physical pain brings sadness
Yes, the pain itself is bad. It’s distracting and debilitating. It’s the type of pain you try to breathe through while you wait for it to end, except it doesn’t end. But that physical explanation doesn’t cover the full spectrum of the chronic pain experience. The pain I experience has a different effect than a single, isolated episode of pain would. It’s tied to difficult emotions and fears. So, every time I feel a spike in physical pain, it comes with a spike in hopelessness, sadness, and anxiety.
The thoughts that come with my pain are as bad as the pain itself
As I laid on my bedroom floor late last night, attempting to contort myself into a position that didn’t hurt, I listened to the thoughts swirling in my mind like heavy rain clouds. They were more complex than “This hurts.” Instead, I was having thoughts like, “Why did I have to get this disease?” and “How am I going to live the rest of my life like this?”. I noticed the same thing while I sat at my desk today. My pain was bad, making it difficult to focus on my work. I started thinking, “How much more productive would I be if I wasn’t in pain?” and “How am I going to have a successful career with this condition?” The thoughts attached to my pain are just as bad as the pain itself.
With temporary pain, like a procedure or an injury, it is comforting to know that there is a set time when the pain will end. You know you will eventually feel relief. With chronic pain, that comfort does not exist. When I’m lying on my bedroom floor at 2:00am because of the pain, the only thing I know for certain is that the pain will still be there when I wake up.
It shouldn’t come as a surprise that a high percentage of people with chronic pain are affected by depression. Our pain is not just pain alone — it’s entangled with uncertainty, sadness, and anger. Over time, this takes a toll. The stabbing pain I feel when I walk isn’t “just” pain — it’s a reminder of my chronically ill reality and the years of pain that lie ahead. I can’t help but feel angry and resentful. Trying to “think positive” doesn’t work quite as well after the first few hundred times.
We carry emotional weight
It’s difficult when other people try to relate to my pain by comparing their own. Not only is the physical sensation different, the emotional experience is too. Temporary back pain caused by a sports injury is not accompanied by the depressing thoughts I have on a regular basis, like “What if I’m limping on the day of my wedding? Will I have to limp down the aisle?” That’s the emotional weight that those of us with chronic pain carry every day.
It’s hard to acknowledge the mental space that my pain takes up every single day. But I think that being aware of the association between my physical and emotional pain will help me cope better. Also, if other people know how emotionally burdensome chronic pain is, they will better understand me and what's on my mind. On my bedroom floor, at my desk, or out for a walk, this is my reality — feeling flames engulf my spine and frantically putting out the resulting fires in my brain.
Does reading AxSpA patient stories help you in your journey?