The Reality of Living With Chronic Migraine
If chronic migraine (CM) is your constant companion, it’s likely you’ve gone on a long, twisting journey through a medical minefield. I too struggled for years and finally realized I had to become my own advocate to battle this disease. Everyone knows someone who gets migraines, but very few know about the reality of life with chronic migraine.
Chronic migraine occurs in approximately 1% of the U.S. population, the same number of people as the residents of Los Angeles and Chicago combined. Worldwide, it is estimated that 144 million people live with CM.
Migraine exists on a spectrum.
On the severe end are those of us living with CM, defined as having “15 or more headache days per month for a duration of three months or longer.” If, like me, you are in that group, your reality is that you have migraine or head pain more often than not.
Those who haven’t experienced CM or lived with someone facing it can find it impossible to imagine the pervasive effect it has on every single aspect of a person’s life.
Chronic migraine changes your ability to live your old life.
Unpredictability becomes the norm. Suddenly, engaging with life, even at its most basic level, becomes challenging. Your body no longer responds as it used to, and keeping up with activities that defined your life before CM is not always possible.
One major stressor? Treating chronic migraine is not straightforward, there are a lot of moving pieces, and finding what works for you can be extremely arduous. Many people try to find a neurologist who treats severe, uncontrolled migraines, and most patients must navigate trying out different medications and dealing with side effects. Neurologists recommend trying a medication for three months to evaluate effectiveness, and it can be frustrating to wait and hope for relief with no guarantee that you’ll actually find any. But it’s not only about taking a pill. Preventative medications are often coupled with Botox injections, nerve blocks, infusions, and rescue medications. Lifestyle modifications including dietary changes, sleep hygiene, and stress management practices are added on. One of the most difficult things for a newly diagnosed chronic migraineur to comprehend and accept is the fact that, most likely, CM treatment is not a quick fix.
Sharing the reality of life with chronic migraine is a challenge.
Too often, when I share that I live with CM, the response is, “I get migraines, too.” My stomach sinks and I struggle to explain that I am treading water in the deep end of the migraine pool. Sharing what I have learned about CM has been difficult. I have experienced guilt, sadness, and disappointment when I could not keep my commitments, and the unpredictability of CM is a daily struggle. Some people will “get it” and others just won’t.
If you are living with chronic migraine, please know you are not alone. To others reading this: recognize that the reality of living with chronic migraine is complex, misunderstood, and challenging. Together, we can work to better understand all migraineurs, wherever they fall on the spectrum.