When Chronic Pain Comes Between Me and the People I Love

I have typed the question, “do I have social anxiety?” into my Google search bar countless times since the start of my journey with chronic pain at 21. Even before then, I dealt with anxiety for years. I often wonder where the dynamic, encompassing ripple effect of chronic illness ends and my anxiety disorder begins.

I grew up as an extremely social child. I would spend all week looking forward to the sleepovers and playdates that filled my weekends. My mom famously jokes that the first words out of my mouth as a 2-year-old were, “Where are we going today, Mommy?” My personality was defined by an ever-present “on the go” schedule, so much so, that the dramatic shift in routine brought about by my chronic illness forced me to grapple with developing an almost entirely new social identity.

I have had to learn new skills also. The activities, outings, and events I used to schedule and attend without thinking twice about, must now be carefully evaluated as to whether I have the physical and emotional stamina to participate in them. The energetic “output” of socializing is a cost I must continually weigh against the reality of my level of pain.

When I consider meeting a friend for coffee, attending a family birthday party, going to the mall with my mom, or going on a walk around the park with my husband, my mind is busy doing mental calculations as to the light, sound, temperature, and noise triggers of the activity and how much bandwidth I have on any given day to tolerate them. When making plans, I am mindful to set up “escape route” options — whether that means asking a host if there is a dark room I can lie down in mid-event, setting up a “rest-nest” in my car, or ensuring that I can leave an event early without it being an issue. The mental prep work before actually engaging in any activity requires me to consider “worst-case scenarios” and set up safety nets wherever possible.

As I write these words, I’m alone on Easter Sunday while my husband is out to lunch with his mom and brothers, and I’m hoping that my choice to stay back and rest will allow me to visit with them later without absolutely blowing my pain levels out of the water. Since the group knew that for me, going out to a restaurant would be out of the question, they offered to bring lunch in so we could visit here at home. As much as I would have enjoyed more time with them, I knew that today, I would pay a huge physical “pain price” for such a long period of socializing. Having dealt with elevated migraine pain every day this week, and being forced to reach for my abortive rescue medications nearly daily, I had no choice but to say “No, thank you.”  Although it makes me feel awfully guilty and confused to admit this, when I think about trying to visit later, my stomach sinks with dread. I love my mother-in-law and my husband’s brothers. I love being part of this big family, so having fear about spending time with them is a confusing emotion to hold space for.

Anticipatory anxiety or dread are often the emotions that come up for me when I make plans to socialize, even when those plans are with people who I truly love. The hard truth of living with daily, chronic pain is that a lot of the time I spend with people I love, I’m in intense discomfort and pain. Much of the time, I simply do not feel physically up for what I am asking my body to do. Although I do limit my activities when I absolutely cannot push through escalated pain (even when there is sadness in doing so), living my life and spending time with the people I care about means that when I can push through, I often do.

When I find myself in a social situation, and I am in pain, it’s easy to forget that everyone I’m spending time with probably isn’t also hiding fear, anxiety, and pain behind their smiles and socializing. It’s easy to forget that this weight that has become such a fixture of my reality isn’t something that everyone else is also carrying. It’s easy to wonder how the people around me seem to be interacting so effortlessly when I’m holding back tears. It’s easy to be hard on myself about my need to take rescue medications to try to quell spiking pain when others seem to be just fine in the same environment. In those moments, it’s easy to wonder what is “wrong” with me for not wanting to socialize.

When I go down one of these mental spirals, I eventually catch myself and reality-check some of those thoughts. I remind myself that everyone else isn’t just acting like they feel OK —  that most of the time, they actually do feel OK. I remind myself how normal it is to be anxious about spending time with people when the mere act of doing so is something my brain has learned to perceive as a pain-inducing threat. I remind myself, gently, that holding space for the duality of valuing spending time with the people I cherish and the deep challenge of doing so while managing physical pain is incredibly emotionally taxing. 

I hope that if you find yourself navigating the confusing terrain of chronic pain too, these words can whisper some reassurance into your experience. I hope they can remind you that what you are attempting to balance is as difficult as it feels. And if you happen to love someone who is living with chronic pain, I hope this peek behind the curtain can bring you a bit more understanding about their struggle.