How to Deal With Loss From Migraine

Think about all you have lost by living with migraine. Really, think about it...

Woman With Migraine.

Source: Matteo Vistocco/Unsplash

Elizabeth Bishop writes in her insightful poem, “One Art":

“The art of losing isn’t hard to master;

so many things seem filled with the intent

to be lost that their loss is no disaster.

Lose something every day. Accept the fluster

of lost door keys, the hour badly spent.

The art of losing isn’t hard to master.

Then practice losing farther, losing faster:

places, and names, and where it was you meant

to travel…”

Now, think about the following questions, seriously reflecting on each one before moving to the next:

• How much of your life have you lost to migraine and other chronic illness?
• In what ways have you experienced loss due to migraine and other chronic illness?
• What ways do you anticipate loss due to this disease?
• Who else in your life has “lost” due to your debilitating illness?

A thorough and well-written article in the New York Times appeared only a couple of days ago (July 25, 2021) in which columnist Thomas Zeller speaks of his personal suffering, as well as arguing that, while this is a good time to be a migraine sufferer, in the sense that science is finally paying attention to this sometimes crippling disease, there remains much mystery, and a long way to go in terms of treatment, those who provide it, and the stigma that remains: “At the same time, the new drugs, while remarkably effective for some people, are yet another heartbreaking failure for others, suggesting that a more fundamental neural trigger or target remains elusive. These medications are also not cures” (Zeller). He goes on to effectively speak about the historic lack of funding, and the shortage of medical professionals specializing in migraine/headache practice.

What particularly struck a chord in me, as a migraine sufferer, was the passage on loss, referencing a 22-year-old migraine patient. It made me pause:

“The most painful thing to me, aside from my physical pain, is the incredible feeling of loss migraines have brought me. I know I am smart, but my schoolwork does not mirror it. I know I am social, a good daughter, a good friend, but I worry my life does not mirror this either … I guess the loss I feel is the loss of what I could have been, or could be, or could do, without migraines” (Zeller).

• So, why should we think about the losses we have incurred?
• Why not focus only on the positive times and experiences we have had?
• Won’t reflecting on these difficult topics make us more angry, more depressed about the illness we live with?

I think not. As a professor in the humanities, I’m asking you to spend some real time reflecting on (maybe even, I would suggest, writing about) your personal narrative regarding the questions I raised above. Doing so allows you to become more conscious of the direct and indirect ways migraine impacts your life, work, relationships, and experiences. Without acknowledging them, we can’t work through them to come to a better place with the “companion” we live with.

Let me try to offer an example of my own:

My migraine became chronic about 20 years ago, but I have noticed only fairly recently that I have become increasingly fearful of making plans, even a few days in advance, much less trying to make plans for a trip months ahead. I have had to really step back and contemplate the reason the fear has become so predominant.

The answer is loss.

I have lost many events, experiences, and opportunities to migraine. But, as I thought more about loss and fear, I realized it was after one two- to three-month intractable migraine about nine months ago that something in me shifted dramatically.

The losses had mounted: missed meetings and times with friends and family. Obviously, too, I was feeling like “nothing is going to break the cycle this time.”

However, it wasn’t these losses that caused the shift in me—my attitude and fear. It was the lasting impact of a text from a longtime supporter, someone who had known me throughout my 44 years of migraine, who, in a simple text, implicitly questioned the seriousness and validity of my illness when I had to miss an important event. That single text, just a few words, in fact, shook me to the core.

I had not just experienced what the poet at the beginning of the post referred to as “no disaster.” I had suddenly mastered the “art of losing”—I felt betrayed and lost trust. I began to wonder who else didn’t believe me or understand my illness as well as I had thought. I started questioning myself and felt insecure.

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According to Dr. Cynthia Armand, M.D., a neurologist at Montefiore Medical Center in New York, "Someone with migraines spends the majority of their time proving to the outside world that something is wrong ... So the last thing they need is their own [loved ones] to not believe what's happening” (Quinn).

I had to think about the questions I raised above to get here, to realize my fear of planning ahead has come out of this one time, one layered loss. I know now that I don’t fear planning only because I might end up with a migraine and not be able to fulfill my intent but, more, because I’m afraid I’ll be hurt again, not believed again.

What is the gain in getting to this point?

Again, here's where we might say, well, you now understand the extent to which you were hurt by this one text, but where's the good in that realization?

I can step back now. I can better grasp that the hurt and anger caused me to take my fear to a new level, an irrational one, given my wonderful support network. This was an anomaly, not the norm. Nonetheless, I want to make clear, it is the norm with some migraine (chronic illness) sufferers—this minimization, dismissal, and lack of understanding and education.

I will work to plan things again, knowing, of course, that there will be times I’ll have to adjust, have to cancel, and have to again trust that my loved ones, friends, and colleagues will understand and support me. And will ask again.

There are so many kinds of loss each of us faces as we live with a stigmatized, invisible, still misunderstood disease. Again, as a believer in the benefit of thinking and writing, I ask you to return to the questions raised at the beginning. Either by yourself or with your fellow migraine sufferers, write about the losses, and then talk (write about) with them about ways to cope with them better than you have been. I'm not foolish enough to suggest you turn these losses into gains, though in a future post, I might, at least suggest, it's possible...