Everyday Thoughts and My Chronic Illness
When it can affect every aspect of your day-to-day life, there’s no forgetting about a chronic illness. After I was first diagnosed with ankylosing spondylitis, I had trouble plugging the steady leak of worrisome thoughts about what my life would look like with this nagging, painful, constant companion. If I’m being honest, for several months there I had trouble keeping the leak from becoming an overwhelming flood of thoughts, fears, and emotions.
Now, more than five years after my diagnosis, I manage not to worry so much about all of the uncertainties that come along with this disease. That’s not to say that I don’t think about my AS often.
I think about my illness every day
The truth is, not a day goes by without the fact of my illness entering my mind. Not a day. Taking medications daily is certainly an instant reminder, but there’s more to it than that.
Often, thoughts of my illness begin with the onset of pain. Sometimes thoughts brought on by pain are reminders to consider my limitations. This is the case when I’m performing some task that requires physical exertion, such as working out, gardening, or even doing household chores.
At other times, thoughts of my illness are calls to action. When I’m in the office, for example, I can easily become engulfed in my work to the point where I spend several hours sitting in one place without getting up. In that case, thoughts of my illness prompt me to stand up, take a walk, and loosen up my joints.
And sometimes thoughts about my illness are thoughts of concern. This is true when I anticipate my illness becoming a limitation for me while in the presence of others. For example, I recently survived a mandatory work event that consumed my thoughts for weeks beforehand. The event was outside and I had no guarantee beforehand that there would be ample seating. Luckily, I was released from the event after only 2 hours on my feet, but I had spent SO MUCH mental energy in the days and weeks leading up to the event worrying about what I could say and what I could do to make it through without being a burden to others.
Factoring AS into every everyday activity
Then there are the daily thoughts about how my AS will affect this gathering or that activity. When my wife and I go out to a restaurant or brewery, I have learned to ask for a certain type of seating, to get up occasionally to move and stretch, and to cut outings short if the pain becomes too intense.
When we visit family or gather with friends, that near-flooding feeling of worry and grief reappears. I always want to make the most of our time with family and friends, but what I want and what my body will allow are often at odds with one another.
And then there are those activities that I truly love, such as hiking the great outdoors. During those activities, I am constantly dismissing thoughts of my illness, as if wishing it away just for a few hours. As much as I try to put Axial Spondyloarthritis away for a bit, to leave it and any thoughts about it at home for the afternoon as if I could just will it away, it creeps back into my thoughts. It creeps back in to disrupt my plans.
A different frame of mind
I do my best to be positive about this painful and sometimes debilitating disease because, well, what else is there to do? There’s no cure, so I’m stuck with it and it’s stuck with me.
But I’m a firm believer that a positive frame of mind can go a long way in the daily management of my chronic illness. After all, if I cannot fully control the symptoms of this illness, I can do my best to control my thoughts about it (challenging in its own right).
For the most part, I stop worrying about what the long-term trajectory of my life might look like with this disease. Tomorrow is not guaranteed (and clichés are useful sometimes). Instead, I try to keep my thoughts focused on the here and now. I make my thoughts about AxSpA functional--calls to action, reminders, activity modifiers.
Most of all, I try not to let my thoughts dwell on the things that I have no control over. I have no control over the random, unmitigated flare-up so I won’t spend mental energy worry about that possibility. I cannot predict how someone might react to the disclosure of my illness, and no amount of mental preoccupation on the subject will change someone else’s reaction. Likewise, I have little control over whether my spine will eventually fuse, whether I’ll be inclined to utilize assistive devices at some point in the future, or whether my enthesitis will continue to deteriorate my already limited flexibility.
My mental energy is better spent on thoughts of how to best manage my daily symptoms. Instead of focusing on the dread of what may or may not come to be, I choose to be thankful for what is, on what I can still do now.
Can you tell when a flare is coming?