Feeling Bad About Feeling Bad
2020 so far hasn't provided the best space for Keegan, my husband, to get his AS into remission. The stress of the pandemic, having a second baby on the way, and moving closer to family creates much to worry about. There are small moments we connect in the day, and lately, I've been listening to Keegan talk about feeling bad when he feels bad. By that, he means that when he's flaring up, there's mental anguish that comes with that. When he's feeling down physically, his thinking turns to become more critical and negative. Despite stress being the biggest cause of Keegan's flare-ups, the flare-up itself causes more stress.
Flare-ups bring guilt
I see it when Keegan's in a flare-up, no matter how big or small. He does more around the house - cooking, cleaning, etc. He's on edge more. He doesn't take as many breaks, does as much yoga, or takes care of himself as much. I've seen it so many times that within a day or two, I can tell if Keegan's flaring up. His thoughts consume him during these times.
Keegan before his diagnosis was always a determined, highly-motivated guy. He went to art school and spent days, nights, weekends, and most meals in his studio. I remember I'd go and visit him just to give him some company once in a while. But once his symptoms ramped up, Keegan became bedridden. His whole identity of being a tae kwon do martial artist, passionate visual artist, and supportive boyfriend went out the window.
Each flare-up brings feelings of inadequacy. Keegan holds himself to a high standard and looks to accomplish a lot during each day, week, and month. Asking for help isn't an easy task for him despite knowing he needs it.
His thoughts come from a false sense of control
"Would doing a different type of yoga help?" "What if I try this supplement?" "Maybe I should change my diet." These are all thoughts Keegan has during his flare-ups. His guilt often results in thoughts about changing something in his environment to manage a flare-up. Could there be something else in his control to change that would help him? But this all comes from a false sense of control.
One of the hardest truths of AS for Keegan is the lack of control over the cards he's been dealt in life. He accepts it, but he's a driven person, with hopes and dreams. It's tough not to feel like there has to be something that can change and make everything better. After all, that's often the narrative we're sold growing up: if we just work hard enough, we can get anything and everything. Even with trying every vitamin, NSAID, biologic, yoga session, massage (the list goes on), AS is here to stay. And it'll cause symptoms for the rest of his life.
The struggle to move forward through mixed messages
We struggle as a couple and a new family with these moments. As Keegan puts it, he's wading through a river of conflicting messages. His body is telling him something is wrong. WARNING: pain! You're in danger! Yet, his rational brain knows his body is just fine. So his emotional brain is caught in the middle. Where is he to go in moments of brain fog, fatigue, and pain? He doesn't know what to do other than talk to others during these moments. That, and find moments to seek out pleasant physical sensations, like massages and cuddling, to help his body, and thus mind, relax.
If you have any tips on how to get through the mental struggle during the physical struggle, let us know!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?