Chronic pain is not an invisible illness, and to categorize it as such is to give permission to others to ignore its symptoms.
Until very recently I didn’t think this way. I thought that without a bald head from chemotherapy or a big cast on my leg no one is capable of seeing that I’m struggling. Additionally, I work hard to hide how I’m actually feeling (because if I get tired of listening to myself whine than other people are really sick of it), which I realize makes it difficult for others to understand what’s really going on.
But when I started dating my boyfriend I became aware of how obvious some of my symptoms are, even ones I thought I was covering up. Through a few basic observations and thoughtful questions he got a grasp on something that people who have known me much longer still haven’t figured out. Sure, it took effort on his part, a fact I am not trying to diminish, but it’s doable.
As I consider my more obvious symptoms I have to laugh at myself for believing for so long that my pain was invisible. If you choose to read on you’ll see that the origin of a lot of my symptoms are up to interpretation, and in many situations might not be immediately evident. But I’m not challenging my third string to see patterns in my behavior. I’m talking about the people to whom I’m closest or with whom I spend the most time. I’m talking about the inner circle people who still get caught up on the inconsistencies of my chronic condition.
I think my most obvious symptom is my atypical gait which falls somewhere between a wide-leg cowboy walk and a bit of a limp. When it’s really bad I just sort of shuffle along. I also cannot walk up stairs like an average twenty-something because I’m not great at lifting my legs at my hips to get to the next step. I have to tackle stairs at a bit of an angle, sort of an outward and upward approach. No, I don’t hold onto the railing with two hands and take thirty seconds to ascend each step, but if you just look up for a moment you’ll see what I mean.
When I get out of a chair I use my arms to help hoist myself up and take some of the weight of my body off my hips. And when I’m sitting in a chair I have to constantly change positions not because I’m a squirmy toddler, but because I’m uncomfortable. To get up from the floor I have get on all fours before I can stand because going from sitting straight to standing is impossible. If I have to plug something into an electrical outlet close to the floor, get something out of a low oven, or bend over for any reason it takes me an extra beat or two to get into that stooped position, and even longer to get out of it.
It’s true, there are inconsistencies in my day-to-day activities. Sometimes I’m just trying to react to my fluctuating pain, and other times I’m determined to be social no matter how poorly I’m feeling. Occasionally the extra energy I need to keep going after I’ve reached my limit is depleted by more pressing matters that come up earlier in the day. The symptoms listed above, however, are pretty consistent, and so is the fact I end every day in pain. Just as it’s important for me to look at the big picture of my condition rather than get caught up in every little peak and valley, it’s vital for others who wish to understand to do the same.
I don’t expect anyone to take the time and effort to nail down the nuances of what my chronic pain looks like, nor do I blame anyone who doesn’t want to deal. We all have our own “invisible” problems, and those certainly need your attention more than I do. But step back for a second a realize that my pain is out there in the open for anyone who wants to take the time to see it, and don’t try to blame me for your lack of understanding.
(Unless you do everything right and still can’t figure it out, and then ask me to clarify and I bite your head off…that’s on me.)