We’ve all heard it: people questioning whether or not the condition is real. And if they even believe there is such a thing as migraine, many still can’t fathom the severity of pain we face. They don’t understand migraine as a complex neurological condition. Often, they equate it to a bad headache. Additionally, society has done a fabulous job of reinforcing the idea that people fake headaches to get out of commitments. We pay the price for these misconceptions by feeling judged and unsupported.
One unfortunate consequence of feeling the constant brunt of judgment from others is that people with migraines sometimes turn on each other in the very same way. It’s almost as if we have internalized the negativity and defensiveness so deeply that when we hear others struggling in similar ways, we may forget to offer compassion. Perhaps because we so rarely receive it ourselves? Sometimes there seems to be a need to “one-up” each other with a “mine’s worse than yours” response, because we’ve grown so accustomed to trying to prove the seriousness of our condition to others who don’t have it. Encountering judgement when we are trying to find a safe community to share our stories, blunders, fears, and triumphs can be both defeating and heartbreaking.
For example, both online and in person, when I mention I stopped working due to chronic migraine, I have heard people with migraines reply, “it must be a luxury to be able to stop for the pain. I simply power through- because I am so strong or because I simply have no choice.” I fully understand that some of us don’t have the option to pursue disability. Some of us have to work despite the pain. This is a grueling reality and it does require an immense amount of strength. I have been there. However, hearing such a response puts me on my heels because the claim that one can choose strength to overcome pain insinuates that I am weak and cave in to mine.
I try to believe that there was strength involved in facing up to the fact that migraine was ruining my life to the point that I had to upend and change it completely. And for those who claim that not working is a luxury, I promise you, there is no luxury in being labeled ‘disabled’ when forced to end a career I loved. There is no luxury in having my salary cut in half and be left trying to find a way to make it work financially. There is nothing luxurious about stopping working out of desperate hope that doing so would lead to a lift in my pain only to find that it is still just as intense and relentless- which leads to being trapped in my home most of the time.
When it comes to people with migraines, let’s try not to judge those who take different paths from us. After all, migraine demands so much from each of us. Some of us have migraines every single day and are in pain 24/7. Others have migraines once a week, or less. Whatever the case, migraines are not a competition to be won, and we are all entitled to our own experiences.
I’m eternally grateful for the online and in-person support I have received from so many people living with migraines. We understand the experience like no other. Still, there is room for improvement. Because we are collectively judged for this draining, exhausting, and invisible condition, let’s seek every way possible to support and lift each other up as one community.