Not to Blame and Not a Victim
Comments like these are all too familiar for many of us in the migraine community:
- "You should stop stressing so much."
- "If you ate better, you'd probably have less headaches."
- "You're just worried about school/work/kids."
- "You need to exercise more."
- "Just stop thinking about migraines and you won't get any more."
Many of them are well-meaning if misplaced. Let me give you an example: I drink two large bottles of water every day at work alone. Staying hydrated is an important part of prevention for my migraines. Anyone who really knows me sees I'm always with a glass of water. It's boring, but it does the trick. Yet sometimes a concerned acquaintance will say, "You should try drinking more water." Trust me, if I did, I would live in the bathroom. But at face value it's not bad advice. I had a friend with migraine recently start carrying a water bottle with her and it helped cut down on her attacks. It turns out dehydration was a major trigger for her.
Lost in translation
The problem is, when not well-prescribed or thought out, advice from an individual who is not familiar with migraine or you can make it feel like they are placing blame on you. "If only you did xyz, you wouldn't be causing yourself disability." The trap is in how the message is either intended or received, and it can often get lost in translation. These comments combined with a general message from the public that we should be able to live headache-free and it's strange if we are still in pain after making healthy life choices can easily lead to self-blame. Outside blame is one thing, but falling into the trap of blaming ourselves is unhelpful and potentially damaging.
Then, when faced with continued self-blame it is easy to become defensive:
Keeping an open mind
I've thought and spoken a variation of each and every one of the above sentiments. In some respects, they have a grain of truth. For example, in 2012 I went on an extensive elimination diet. I cut out wheat, dairy, citrus, bananas, chocolate, nuts, caffeine, alcohol, fermented foods, artificial sweeteners, MSG, and probably some other things I'm forgetting. I followed the diet religiously and after a few months I slowly reintroduced each food, one at a time, back into my diet. The effects? Zero. No food or drink except alcohol (but I knew that already) has an effect on my migraine attacks as far as I can tell. It was an exhausting and daunting experience to go through the diet. I distinctly remember my birthday dinner that year, where I had to hold back tears looking at the menu at the restaurant because there was pretty much nothing I could eat. If my doctors had been able to test for food sensitivities, or heck if they had even diagnosed my migraines sooner (like ten years sooner!) I probably wouldn't have had to go through that frustrating experiment. It wasn't my fault my migraine attacks had gotten so severe.
Letting go of the blame
But the problem with moving the blame off ourselves and onto something else—our doctors, migraine disease itself, uncontrollable life stressors, etc—is that we then become the victims.
Blame has to go somewhere, right? If it isn't on ourselves, then it can be natural to blame everything external that has gone wrong. How about we remove the blame? How about the fact that migraine just... is.
- We happen to have a disease that can be greatly affected by lifestyle factors. That does not make us to blame.
- We happen to have a disease that is greatly misunderstood, undiagnosed, and undertreated. That does not make us victims.
We are just fighting, learning, adapting, and trying to feel better. That's all.
When it comes to planning vacations or other events where travel is required, how much does migraine factor into your decision-making?