I described a lot of types of pain in my last post. I’ve been thinking lately about how attitude can impact our perception of pain.
Take this example -- you’ve been working out a lot lately, and feeling really good about it! You have more energy, confidence, and your muscles are looking more toned. You feel sore the next day, but you smile. Sure, it hurts a bit, but it’s just proof that you’ve worked hard and that it’s paying off. You massage your muscles a bit and then go on with your day.
This is pain. Very real pain. But it’s a pain we feel proud of, a pain we chose, the result of a positive change in our life. So we don’t stress about it and it doesn’t feel too bad.
Compare this to a persistent pain in your knee. You don’t know what caused it, but it gets worse when you try to do anything active and has been making it harder to go out and have fun. You’ve tried icing, massaging, stretching… nothing seems to help. On top of this, you’re afraid this might be symptomatic of a larger problem that you need to deal with, or that it might be the end of your running career. It starts to hurt so badly that it ruins your day.
So why the difference? You might think, well, one is just a worse, more painful, pain, and that’s why it feels worse. But here’s the thing -- before my diagnosis, I mistook my EDS and inflammation pain for that first kind of pain. I had gotten out of shape after college, but decided to take some yoga classes, join the local rugby team and get back into shape. The combo of less muscle strength + stretching + overuse/contact + MCAS = bad news bears. My joints were literally falling apart, with permanent damage in some cases. But I was blissfully unaware! I’d been working out my whole life and never had problems before.
Sure all of my joints hurt and all of my muscles and even skin were horribly tender -- but I just figured that was fatigue from all of my hard work! I certainly noted that it was worse than usual, but brushed it off and felt proud of the work I’d put in. The pain didn’t bother me until, in a sprinting relay at practice, I collapsed and couldn’t get back up. Something was wrong with the top of my left hamstring and I couldn’t make it work. Even then, I figured it was just overuse, so I rested a bit and happily awaited the day when it’d feel better and I could get back to it. The pain wasn’t so bad because I wasn’t worried.
When it didn't get better, I started to notice the different types of pain that were new, realized I couldn’t even walk eight minutes to work, and ultimately got the EDS diagnosis, suddenly my perception changed. This pain was not normal or healthy. It was not the proof of my muscles getting stronger, but rather evidence of my joints deteriorating. It was my body screaming at me to stop.
I don’t think the pain, in that particular moment, was much different or worse than it had been for a year prior, but it felt debilitating. If it hurt to walk, I felt I couldn’t walk. In fairness, my hips and SIJ were so out of place that I actually probably couldn’t walk, but still. The fear that pushing through the pain could make me worse made me fixate on it. The various emotions I felt about the diagnosis also exacerbated the pain. The lack of control, the fact that this is something in my genetic coding that I did not initiate, also made it feel worse. And the resentment over the years of misdiagnosis certainly didn’t help.
So, what can we learn from this? Pain is unavoidable. It will always be part of my life, likely every day in one form or another. Trying to “fix” each pain is a waste of time -- much of it is out of my control and I could go crazy trying to chase perfection that I’d never reach. But I can change how I perceive the pain. I can let go, distract myself, and practice self-compassion. I can meditate on the positive sensations in my body. I can do the exercises that I know will, in time, make things feel tighter.
In the last post, I mentioned that intestinal pain is my least favorite. I’ve recently had a breakthrough, however, and I’m very excited about it! When I’d feel the warning signs of a bad intestinal episode, I used to hide it out of shame and try to push through with my day. It would inevitably get worse and I’d feel terrible, ashamed, and angry at myself for not avoiding it, or scared because I didn’t know what had caused it. If I rested, attempting to avoid an episode, only to have it happen anyway, I’d feel resentful that I couldn’t fix it.
Lately, here’s how things have changed -- I know my triggers, and therefore can often avoid bad episodes. When they do come, I feel a wave of gratitude that it’s less frequent and each episode is shorter and less painful than previous years. I’m also better at identifying when it’s going to happen. I tell someone so that I feel less alone and bring something to take my mind off of the pain, whether a good playlist or a show on Netflix. And talking about it in general has helped to alleviate the shame.
Here’s the thing, though. Most of the episodes I’ve had this year were my choice. I’ve gotten pretty good at nipping it in the bud if I want to -- I avoid triggers, hunker down, rest, do some sensory-deprivation, etc. So when I do get sick, it’s because I chose not to take care of myself in those ways. This may seem like a subtle change, but it’s huge. I could’ve skipped dancing. I could’ve not hung out with friends. I could’ve said no thank you to chocolate cake. I had that choice. I knew the consequence and nevertheless, I persisted. So when I’m lying on the bathroom floor, trying not to vomit in between bouts of searing pain and acid exploding out of me, I focus on what led to being sick. I have actually gotten to a place in which I feel grateful, of all things, while feeling my absolute worst. Because I was strong enough to choose pain over avoidance. I chose to live my life and walked into the pain head on. And I have no regrets. That has made a world of difference.
Final thoughts
I recently saw a report showing that 80% of the world’s narcotics are used in the US. I wonder if we have an unhealthy relationship to pain in the US. Our patient satisfaction surveys, over which hospitals get either penalties or funding, ask us whether our pain is gone. We’re not asked if we feel cared for, or ready to cope with future pain. We’re asked if someone magically took our pain away. Pain is there for a reason. It gives us information, tells us to slow down, reminds us to take it easy while our surgery wounds heal. I’m not suggesting that we abolish pain meds, but maybe we could do a better job addressing pain rather than simply masking it.