The Trap of Terminal Uniqueness

September is Chronic Pain Awareness month - which always makes me chuckle a bit, when literally every month is pain awareness when you live with chronic, persistent pain that affects you physically and mentally.

If you’re a chronic pain sufferer, you know pain affects everything you do and every part of you life, introducing an uninvited guest to every second you’re conscious.⁣ It affects every moment, decision, plan and dream.⁣ It affects your present and future, how you prioritize your days, and what you must fend off from your subconscious.

Even though I’m infinitely better than when my CRPS began, I cannot think of an activity that doesn’t cause some discomfort, or a day I’m not mindful of how to not create more. I look fit, and have worked hard to maintain function as best as possible. Yet to really get a sense of what it’s like, you’d need to spend a day or more with me. Not a 20 minute appointment, or a one hour physical therapy sesh, or a 2 hour zoom call… It’s in the culmination of the positional challenges, the toll on my nervous system, and by night being in very different shape than in the morning.⁣

This is obviously very challenging. But even harder than smiling and laughing the best I can through it, is being miserable, hopeless and defeated…Which I have done before.

My nervous system has been through a lot. Trauma, addiction, brain injury and neuroinflammation, nearly a hundred medications, electroconvulsive therapy, a lot of different types of pain…these experiences change you. But I can’t even blame pain all on that, though that is indeed the perfect brew of toxic stew for CRPS to develop.

From a young age I was stressed. I bit my nails, had trichotillomania, was OCD. I was also very active. Always running around, jumping and super competitive and disciplined especially around things I loved. Hints of neurodivergence much? But I was hard working and excelled in school, so it was never looked at as an issue. I dealt with a lot of things a teenager should never have to, traumas and burdens that weren’t mine to bear.

The output of a lot of what I lived though would be chronic pain even without CRPS. With it, it created the greatest challenge of my life. Nonetheless, I CHOOSE joy. Just for today. Chronic pain has taken a lot of things from me. It almost killed me long before this disease. But it’s also given me my greatest purpose.

We all experience suffering…It’s just for different reasons. And it’s all relative anyway, so does it even matter? The point is why we feel things may be different, but the feelings are often actually quite similar…Loss, grief, loneliness, isolation, insecurity, fear, abandonment, anxiety, depression. Are any of those terminally unique situations? No. They’re all part of the human experience. And they’re unavoidable. No matter what causes them.

“Pain is innevitable, suffering is optional.”

To the degree to which we are willing and able to connect to each other, I would add. Because the greatest form of human suffering, is holding on to that which is changing. And we do this in so many ways as humans…to our health, to our loved ones, to our dreams or our youth. It’s not unique to chronic pain. Things are always changing, and how we accept and adapt to that, is significant.

If I could give both spoonies and regular folks each a piece of advice, it would be to try to connect over what we have in common, and that making an effort to understand our illnesses/challenges means the world to us. This month think of how you relate to others struggles you can’t see or don’t understand, and try to create more space for that experience so we can connect over being human - even if what we experience itself is different. It helps us all.

For more strategies to navigate difficult conversations with family, and efficiently explaining your pain to outsiders who may not understand, check out episode 32 and episode 27 of It’s Not in Your Head Podcast.