What Does Positivity Look Like With AS and Chronic Pain?
For the past year, I became a bit of a cynic when it came to the positivity movement I'd been seeing all over Facebook and Instagram. It seemed like a hokey, snake-oil solution to getting rid of one's problems. "If I just think positive, then I don't have to ever feel bad again" is what I saw every time someone posted about being positive. But recently, I realized I didn't really understand what positivity is and what it means to stay positive.
If you were to look at me and my husband, Keegan, who has AS, you'd see a typical couple. I'm Type A and he's Type B. I tend to worry and over-plan, he tends to go with the flow. I typecasted each of us for the last decade in our relationship this way, until Keegan had to manage being a stay-at-home dad with his AS and chronic pain. I'd worry day and night about how he'd do this. Yet, Keegan does incredibly well with all this on his shoulders. And I asked myself how and why.
Positivity isn't wishing away suffering
I realized a key difference between me and Keegan: he's a positive person but that doesn't mean he doesn't feel the suffering of life. He doesn't deny the pain of his AS. He sees it, recognizes what it does to his mind and body, cries it out, finds friends to talk to when he needs to, etc. Positivity manifests as acknowledging the suffering he's going through and finding the support he needs to get through the tough times. It's truly and authentically feeling that suffering to work through it.
Positivity is not skimming over any of this. I tend to get stuck in this place. I deny the hardships life brings hoping to skip to the happy parts, but the happy parts don't come. I don't let myself feel what I need to feel, and this means I'm often blocked from feeling hopeful, optimistic, or just content with what is.
Acknowledging what helped us get through the day
One of my favorite moments of the day is sitting down to dinner with Keegan and our daughter and doing a quick "cheers" to getting to dinner. It's like our checkpoint every day. "Look, the day brought us so much, yet we still got here." It's a nice way to remember that even when tough moments come, we, as a family, can stick together. As part of this moment, I'll ask Keegan, "What brought you happiness today?" and it's a great way to talk about the moments that made us smile. Sometimes there aren't that many, but reflecting on the day helps us relive those positive moments.
Giving thanks for our support systems
Support systems are crucial to staying positive with AS. It's a fine line between finding a content lifestyle and struggling to manage day-to-day. As Keegan and I have grown together, we've made deliberate decisions and reminded each other the pieces of life that keep us going: a consistent group of friends, places to walk to, and living somewhere not too far from family. (Although Philly to Ohio is a stretch.) We've moved, chosen jobs, decided on kids, etc. all with the mindset that what helps keeps us going has to continue to be in our lives. For years, we lacked a friend group and Keegan's diagnosis was excruciating. So we decided to move somewhere with more potential to find friends--and we did.
So what does positivity look like for our family? It's not really about being happy all the time. Or being sad. It's more about getting through each day, finding moments that bring us back to what matters most, and focusing on what brings us happiness. Then, the constant struggles of AS and chronic pain seem more manageable. We can't wish them away, try as we might, but we can design a system to help us get through the tough times and to put a smile on our faces.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?