I found similarities between how people respond to migraine and COVID-19. It’s important to remember how our language affects others.
One morning in February, I woke up with a sore throat, swollen glands, and a pounding headache. Normally, my first thought would have been that these were symptoms of COVID-19.
“It’s not COVID,” I told my mom. “I’ve only been in the office for 2 days. It’s probably just a chest cold.”
I clung to this belief right up until the moment when I swabbed my nose in preparation for a rapid antigen test. It only took a few minutes for the test strip to show two magenta lines, meaning I had tested positive for COVID-19.
A strange feeling came over me. I was embarrassed. I felt like I did something wrong.
Over the next week, I slept under two blankets with my bulldog cuddled up to my legs and my Frenchie asleep on my chest. I felt exhausted, yet unable to sleep between the sound of my teeth chattering and my incessant coughing. After a headache subsided, nausea set in along with a migraine attack that lasted for 3 excruciating days.
During this time, I began thinking about how my experience with migraine was similar to or different from that of COVID-19. How did people respond to my COVID-19 diagnosis? What did they say? And was it different from the responses I get from people when I tell them of my migraine episodes?
Each time I told someone I had COVID-19, I kept waiting for them to chastise me for not being one of the lucky ones to escape the virus.
Sometimes, there was this awkward back-and-forth with each of us treading lightly as we navigated the often polarizing conversation about our vaccine status. I would err on the side of caution, offering an explanation that I was fully vaccinated. It was as if I needed to prove to them that I wasn’t being careless or reckless.
On top of feeling embarrassed, I felt as if I didn’t have the right to be as sick as I was. Every news report repeated the same story about the Omicron variant and how it seemed to be producing milder symptoms than the previous strains.
This message carried through to my conversations with family, friends, and colleagues.
“At least it’s just Omicron,” “It’s like a bad cold,” and “It causes mild symptoms, thankfully,” they told me. I knew they were just trying to be helpful, but my experience was far from mild. I didn’t feel all that thankful that it was “just Omicron.”
I couldn’t help but feel a nagging sense of déjà vu. It was like a repeat of the conversations I had over the years about living with migraine.
“Everyone gets headaches,” “I haven’t had a migraine since I changed my diet,” and “Here, take some aspirin” are just a few of the remarks I’ve heard when I mention my history of migraine.
Such comments engender stigma, meaning negative attitudes toward a person based on a perceived failing or inadequacy. Stigma and feelings of prejudice can lead people to retreat from social situations and avoid seeking help.
For me, stigma is what prompts me to overwork when I’m not feeling well. The idea of someone thinking I’m exaggerating my symptoms or trying to get out of work is why I’ve found it so hard to request accommodations.
And when I do request them, I agonize over them, wondering if it’s worth potentially jeopardizing my job or professional relationships.
I could see so many similarities between my experience of migraine and how people were now treating COVID-19.
In reflecting on the past two years, it seemed as though we had all been training for a marathon run. We suited up and started the pandemic journey with fear, anticipation, and hope.
For those of us who got COVID-19 at the 24-mile marker, we discovered that everyone had packed up and left while we were still trudging along.
While I was experiencing chest pains and struggling to breathe, everyone else was moving on from COVID-19 as restrictions were lifted. It seemed as though COVID-19 no longer had a timeline.
But as with migraine, the effects of COVID-19 can be lingering. People have different recovery journeys, and they can experience long COVID, which can be akin to living with an invisible chronic illness.
Recent research has shown that over 1 in 3 patients presented symptoms of long COVID between 3 to 6 months after an initial diagnosis.
Apart from my persistent cough, no one can tell that I’m still recovering. Likewise, no one can tell me with certainty how COVID-19 will affect my health in the long run.
Just like with my migraine, COVID-19 was becoming a “minimized” experience. I have spent years trying to explain to people that my migraine is not “just a headache”, and now it seemed people needed to be reminded that COVID-19 was not “just a cold” for everyone.
I was struck at how similar responses were to both my experiences of COVID-19 and migraine. Often, these were responses that made me feel stigmatized or uncomfortable, even if people genuinely meant well.
Two common responses are “Feel better” and “Let me know if there’s anything you need.”
Since the start of my migraine episodes in 2010, I’ve had mixed feelings about the phrase “feel better.” It rolls off our tongue when we don’t know what else to say.
Plus, “feel better” fits into our narrative about illness. We get sick. We get better. It has a nice ring to it. But in the experience of chronic illness, getting better isn’t a guarantee.
“Feel better” messages also have the effect of closing off the conversation rather than enquiring about someone’s well-being.
We can validate someone’s experience by saying, “I’m sorry to hear you’re not feeling well. That must be frustrating.”
Simply asking, “How are you feeling?” can make a big difference. This open-ended question invites the person to share as much as they feel comfortable.
An offer of help isn’t necessarily effective when we say, “Let me know if there’s anything you need.” This statement puts the onus on the person finding it difficult to reach out and ask for help.
As someone with a grandmother who kept working through cancer treatment and a mother who stayed home sick for a total of 7 days in 14 years at the same company, asking for help or calling in sick is not something that comes naturally to me.
An alternative is asking, “What can I take off your plate?” We can also make a concrete offer of help.
For instance, when I first got sick with COVID-19, a colleague I didn’t know very well offered to bring me soup, Kleenex, and anything else I needed. My boss encouraged me to take sick days.
Minimizing COVID-19 or referring to a particular variant as mild doesn’t make it any less impactful. I’m living with the effects of a virus that took lives and altered others’ lives forever.
Similarly, telling me, “Take some aspirin” or “Feel better” won’t help my chronic migraine condition.
I’ve found that, when people use different responses that invite conversation and show action, it makes a world of difference in how I feel.
Sometimes this affirming language is all we need to make sure we don’t feel alone and that our experiences aren’t being minimized by others.
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