I thrive on social interactions; I genuinely enjoy spending time with friends. Crowds energize me, and I find excitement in meeting new people. However, of late, I’ve had to be selective about my social engagements—not due to a busy schedule or fatigue, but because I live with chronic pain.
My life is significantly influenced by recurring migraine episodes, which dictate many of my choices as I strive to prevent the next debilitating attack. This often leads to missed opportunities and cancellations for activities I would love to attend. I’ve had to carefully manage my energy levels and, when I decline an invitation for a night out with friends, it’s not necessarily because I’m unwell—rather, I’m at home trying to stave off illness.
My migraines take the form of occipital headaches, where the muscles in my neck tense due to stress or my struggle to maintain proper posture. This tension creates painful knots at the base of my skull, compressing my occipital nerves and triggering severe migraine episodes that render me hypersensitive to light and sound. On these days, I may find myself curled up in bed, waiting hours for pain relief, with some days requiring hospitalization after enduring days of relentless pain.
To mitigate this, I’ve taken steps to manage my triggers effectively. For instance, hiring a housekeeper every two weeks has alleviated much of the stress associated with household chores, which can exacerbate my condition. No matter how hectic life becomes, I’m assured a clean home to return to every other Thursday.
When I receive invitations from friends or for social events, I carefully assess my calendar. If I have prior commitments, such as attending my son’s IEP meeting or if my recovery time is limited, I must often decline—even if I genuinely want to participate. I recognize that engaging too much socially could set off another migraine.
It’s challenging not to feel guilty when I turn down invitations, especially when another parent from school suggests I attend a PTA meeting with the lure of childcare and pizza. While I relish those perks and would like to connect with fellow parents, I often have to prioritize my health, which means opting for a quiet evening at home with my husband instead. Sometimes, I wish I could simply say, “I can’t today,” without delving into the complexities of my condition, which often leads to unsolicited advice about remedies that may work for others but not for me.
I often worry about how others perceive me when I show up to pick up my son looking a bit disheveled—wearing oversized sunglasses even on cloudy days, wrapped in a big sweater, and barely able to keep my eyes open due to a looming migraine. I’ve thought about creating a humorous hat that says “Migraine in Progress” to avoid the stares and questions about my condition.
The challenge with chronic illness is that we often appear fine on the outside. We might look tired or off, but we are far from well. The societal judgment and expectations associated with chronic pain can exacerbate our symptoms, prompting some of us to withdraw further to avoid uncomfortable inquiries or reactions.
So, when I decline your invitation to a mom’s night out or volunteering at the school book fair, please understand that it’s not a reflection of my desire to participate but rather a necessity for my well-being. I truly appreciate your understanding.
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To summarize, living with chronic pain involves navigating social interactions and daily life while managing the unpredictability of symptoms. Understanding and empathy from friends and family can make a significant difference.