I consider myself a social butterfly. I relish spending time with friends, thrive in bustling environments, and feel invigorated by meeting new people. However, I’ve recently had to carefully manage my social engagements—not due to a busy schedule or simple fatigue, but because of my chronic pain.
My life revolves around managing frequent migraine episodes, which dictate many of my choices to prevent the next debilitating attack. Consequently, I often miss out on activities I genuinely want to join. I’ve had to prioritize how I expend my energy, and when I decline an invitation for a night out, it’s not necessarily because I’m unwell; I’m simply at home trying to avoid becoming ill.
My particular struggle comes in the form of occipital migraines. Stress or my tendency to hold my head awkwardly causes the muscles in my neck to tighten, which creates a painful knot where my neck meets the skull. The occipital nerves tangled in that knot endure immense pressure, leading to severe migraine attacks that leave me hypersensitive to light and sound. During these episodes, I often find myself curled up in bed, waiting for medication to take effect—sometimes for hours. On occasions, the pain becomes unbearable, resulting in a hospital visit because I’ve endured days of relentless suffering.
To manage my condition, I’ve taken proactive steps to reduce my pain triggers. For instance, hiring a housekeeper every two weeks has significantly alleviated my stress regarding housework, which can exacerbate my physical discomfort. After a particularly grueling migraine, it’s a relief to come home to a clean space rather than face the overwhelming sight of a messy house.
When I receive invitations from friends or for social gatherings, I meticulously check my calendar. If I have commitments like my son’s IEP meeting or my downtime is dwindling, I often have to turn down the invitation. This is challenging because I genuinely enjoy the company of my friends, but I know that overextending myself could trigger another migraine.
I remind myself that prioritizing my health and family is crucial, especially when well-meaning acquaintances try to entice me with promises of childcare and pizza at PTA meetings. As much as I’d love to engage and connect with other parents, I often find myself saying I’m busy, which is easier than explaining my chronic migraine condition. I know that discussing my illness often leads to unsolicited advice about remedies that have worked for others, such as ear piercings or dietary changes, none of which apply to my situation.
This can lead to feelings of self-consciousness and the fear of being perceived as lazy or unreliable. For example, I once walked into my son’s school wearing oversized sunglasses on a cloudy day, bundled in a large sweater, just trying to navigate the world during a migraine episode. I’ve even contemplated creating a hat that says “Migraine in Progress” to avoid the stares and questions that often come my way.
Chronic illness is often invisible, and those of us who suffer may appear fine—perhaps a bit tired or moody—but we are anything but. The stress of managing our conditions can exacerbate our symptoms, prompting us to withdraw further to avoid judgment or unsolicited inquiries.
So please understand: I genuinely appreciate your invitations to events like mom’s night out or volunteering at school. Unfortunately, I may not be able to join today.
This article was originally published on February 26, 2018. For more insights on navigating life’s challenges, check out this related post.
In summary, living with chronic pain requires constant management and prioritization of health over social engagements. It can be isolating and challenging, but understanding and compassion from others can make a significant difference.