Grieving With Migraines and Other Chronic Illnesses

Woman with migraine.

Source: Carolina Heza/Unsplash

Do we fully understand the connections between these devastating conditions? I’ve read numerous anecdotal stories on blogs and personal pages of those living with migraine and grieving, and certainly have my own experience to rely on, but do we fully grasp the physical, neurological, and psychological components of migraine? For instance, is there a physical or neurological component of migraine that leads to what sometimes seems like inevitable psychological symptoms, such as depression and/or grief? Could it be that the results of living with the multi-dimensional factors of such illness alone lead to grief and depression?

The wonderful contemporary author Siri Hustvedt, in her piece “Arms at Rest,” speaks to the artificial nature of separating neurological from psychiatric problems: “Periods of obsessive and highly productive writing and reading that give me immense pleasure are often followed by a neurological crash—a headache. My swings from high to low resemble the rhythms of man-depression or bipolar disorder, except that I fall into migraine, not depression, and my manias are less extreme than those of people who suffer from the psychiatric illness….” (Hustvedt 175).

Signs to Watch Out For

Living with chronic migraine or chronic illness unquestionably leads to many of the same feelings of those suffering from depression and grief:

• Isolation
• Loss of appetite
• Inability to sleep
• Overwhelming fatigue
• Loss of hope
• A sense of missing out on life

The unmistakable sense that life is passing us by—that we are not able to experience the fullness of the life we planned and envisioned for ourselves—is a real, tangible loss; we do experience grief.

People living with chronic migraine also experience many of the grief stages we have become so familiar with, including the bargaining stage. This is the time when we want more than anything for life to be what it once was or what we think it could be. We become fixated on anything that could make our illness and pain go away—or anything that could give us some semblance of the life we once had.

Catherine Bush’s great novel Claire’s Head offers us a glimpse into the diary entries of one of the characters, who suffers from chronic migraine: “Sometimes when I lie in bed, it’s as if there’s a figure at the other end of the bed whispering, what will you give up to be free of it? And I’m convinced, if only I can find the right thing—I have given up so much. How much more can I give up?” (Bush 169).

Anger

Anger can also overwhelm us—anger at what we cannot “fix,” what we cannot do, and the help we cannot get. We feel that this life-altering, often life-long disease is unfair and that nobody fully understands its complexity and consequences.

Anxiety

Anxiety sets in as we grapple with long-term migraine, as we have to alter plans, refrain from making some plans, worry about insurance coverage for treatments our doctors want us to try, and wonder when best to take the limited number of rescue medications we are provided with each month, and stress over our work and home life. We are deeply affected by the multitude of symptoms and medication side effects.

We are consistently told to meditate or exercise to combat these factors; frankly, that’s often easier said than done when we are in pain or in the midst of depression and/or grief.

In her piece, “The Seven Stages of Chronic Pain,” Jennifer Martin, Psy.D., shares, “Feelings of emptiness and grief appear at a very deep level. This depressive stage feels as though it will last forever. It is important to understand that this depression is not a sign of mental illness. It is the appropriate response to a loss or a life-altering situation” (Martin).

Learning to Accept and/or Become Resigned

Eventually, often after many years, we come to terms with or create an understanding of our body’s changes, the increased pain, the fatigue, and all the various, often evolving symptoms. Of course, reaching this point doesn’t mean we stay here forever, nor does it mean we become “OK” with it.

Life events that trigger lengthy migraine attacks can bring them back, the illness changes, and symptoms and new comorbidities arrive, and we find ourselves right back there, struggling again with grief and/or depression. However, as author Anna Leahy tells us, “I have come to think of migraine not as a constant, lurking threat, though it is that. I have come to understand it not as something that can be denied or fought, though it can be treated. Instead, migraine is part of the story I must tell of who I am now. Part of what tells my story” (Leahy 201).

Most of us find the stages of grief and depression circuitous rather than linear. Perhaps, in some ways, that’s a good thing. May you find more light than darkness as you travel through the new year.