Editor’s Note: June is National Migraine and Headache Awareness Month. Medical experts don’t fully understand what causes migraines, making the condition difficult to diagnose and treat. This week, Real World Health Care brings you insights from the perspective of a family caregiver supporting a loved one with chronic migraine.
“I never signed up for this”
Quote from a migraine sufferer’s fiancée when he ended the engagement.
How is it possible that such a devastating illness in all its expressions could not have far-reaching, negative effects in all related areas of a migraine sufferer’s life? It’s not, of course. Only recently have we begun to see research that looks at subjects like family burden and the corollary disruption that episodic and chronic migraine causes in the lives of sufferers. Very few of us lead totally isolated lives, devoid of familial connections and other work and relationship associations. More often, the opposite is true. The vast majority of people are interconnected with others through family, relationships and work; these relationships are all compromised by migraine suffering. That’s a lot of people.
Migraine Affects More Than the Patient
In the United States alone, we estimate that there are 36 million migraine sufferers. If we allow ourselves some statistical latitude and cede that each sufferer has two relationships affected by their migraines, the numbers grow exponentially. For the purpose of this argument “collateral” means a person in some level of a relationship with the migraine sufferer. Following this line of reasoning, there are about 108 million people, including the sufferers, whose lives are negatively impacted in a variety of ways. The population of the United States is 319 million at last count. Again, following our assumptions, 34 percent of the U.S. population has their lives disrupted to some degree, by migraine disorders. Remember, this assumption is based on two collaterals only. Most people have more than two relationships. So, if that is the case, the number affected would rise accordingly.
Admittedly, that is a pretty astonishing number. One may question what does “disruption” mean? Migraine sufferers and those that live and work with them would not have any problem answering that question. So, in deference to the two-thirds or so of the U.S. population that may not understand the nature and level of problems caused by migraine attacks and experienced by collaterals, what follows is a less than a complete list. Broken relationships, lost jobs and income, family arguments, emotional distance, canceled family events and vacations, friendships lost, loss of self-esteem (both sufferers and collaterals), anxiety and a host of depressive symptoms, constant worry, and feelings of inadequacy. This list could be expanded greatly, I am sure. But one consequence stands out for me personally in my life with an episodic migraine sufferer: the frustration experienced when I am forced to stand by and watch my loved one’s anguish while being unable to help her in any way.
This brings us to the bottom line: migraine suffering is not limited to the migraine sufferer alone. The misery spreads throughout the lives of associated individuals, not unlike other chronic, disabling conditions. At present, with about one-third of our country’s population touched negatively by this neurological illness, why is so little being done to search for a cure? What will it take?
Some interesting research has been done in the area of caregiver stress. If you would like to read some interesting articles as a follow-up, consider:
Caregiver stress focusing on self-care
Family support essential to surviving migraines
CaMEO research studies the burden of migraine on families, among other variables
The Association of Migraine Disorders strives to expand the understanding of migraine and its true scope by supporting research, education and awareness.