We often talk about the impact of migraine and chronic migraine on migraineurs, but we don’t talk as much about the impact on families and relationships. In a very real way, when one member of a family has migraine or another disease, the whole family has it. That’s doesn’t necessarily mean that every member of the family literally has migraine disease, but the entire family lives with the burden of the disease. The Chronic Migraine Epidemiology and Outcomes Study (CaMEO), has delved deeply into this subject, and a fascinating research poster presented at the American Headache Society’s 2014 annual scientific meeting highlighted the results.
The Poster:** Objectives:**
"To assess the perception among those with chronic migraine (CM) of the nature and extent of migraine burden on family activities and relationships."1
"CM is associated with significant personal disability, but the effect of migraine on the lives of members of a migraineur’s family is less well known."1
- CaMEO recruited persons from a web-based panel, using quota sampling to obtain a sample representative of US demography, who completed web-based surveys over 1 year to characterize migraine.
- This analysis included data from respondents meeting study International Headache Society criteria for CM (15 or more headache and migraine days/mo for past 3 months).
- The family burden survey (FBS) assessed several domains, including but not limited to:
- overall burden,
- family activities missed,
- relationship impact,
- activities missed, and
- interactions with partner/children, important family/life events, and vacations.
- Of 11,518 respondents with valid data, 994 (8.6%) were classified as having CM and included in this analysis.
- 812 (81.7%) of the CM participants were women and 182 (18.3%) were men. Almost three quarters of respondents (73%) thought they would be better spouses if they did not have chronic migraine.
- The majority of respondents (64%) felt guilty about being easily angered or annoyed by their partners due to migraine.
- 67% avoided sexual intimacy with their partners at times due to migraine.
- The majority of respondents (59%) felt they would be better parents if they did not have chronic migraine.
- 61% of respondents reported that they became easily annoyed with their children due to migraine.
- 54% of respondents reported that they had reduced participation or enjoyment on a family vacation due to migraine in the past year.
- 20% cancelled or missed a family vacation altogether.
"Most individuals with CM reported that migraine attacks have significant effects on family relationships and activities. Reduced enjoyment of activities was commonly reported. Women consistently reported lower rates of absenteeism because of HA than men across many activities. Reasons for this are unknown. The nature and severity of attacks may be qualitatively different between men and women, or women may feel more obligated to keep commitments despite a migraine attack."1
Lead study author, Dr. Dawn Buse commented:
"This study highlights the significant impact of chronic migraine, not only on the person with migraine, but on the entire family. Respondents reported missing both routine and special family events on a regular basis and feeling guilty and sad about how this affected their relationships with their spouses and children."2
"Clearly, the effects of chronic migraine can be devastating and far reaching. Chronic migraine can be a great burden, not only from the direct effects of the condition on the person with chronic migraine, but also the effects that it has on family members. The effect of chronic migraine on the family is not commonly discussed; however, people who live with chronic migraine may experience substantial emotional distress caused by feeling worried, guilty and sad about how their condition affects the people they love, adding to the total burden."2
Summary and Comments:
Some migraineurs have commented that people who have never had a migraine can’t possibly understand migraines. I must take exception to that statement because I’ve seen it disproven and because if we continue to think that way, we’re selling other people short.
This study clearly shows that the burden of migraine on other family members is quite significant. Educating family members about our migraines and treatments can help ease the burden on our families. We should also remember that our family members can use support as much as we can. Developing a full-family support system can help both migraineurs and their family members.
Through education and support, we can help ease the worry, guilt, and sadness that Dr. Buse mentioned in her comments. If you need help with either educational resources or support options, please leave a comment below. We will gladly assist you in any way we can.
1 Buse, D.C.; Dodick, D.; Serrano, D.; Manack, A.N. “Family Burden of Chronic Migraine to the Migraineur: Results of the CaMEO (Chronic Migraine Epidemiology & Outcomes) Study.” Poster Presentation. 56th Annual Scientific Meeting; American Headache Society. Los Angeles. June, 2014.
2 Press Release. “Chronic Migraine Has a Substantial Impact on Marriage and Parenting.” American Headache Society. Los Angeles. June 25, 2014.
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Teri Robert is a leading patient educator and advocate and the author of Living Well with Migraine Disease and Headaches. A co-founder of the Alliance for Headache Disorders Advocacy and the American Headache and Migraine Association, she received the National Headache Foundation’s Patient Partners Award and a Distinguished Service Award from the American Headache Society. Teri can be found on her website, and blog, Facebook, Twitter, StumbleUpon, Pinterest, LinkedIn, and Google+.