Leslie Beth “LB” Herbert, PhD Executive Director, Research & Analytics

By Leslie Beth “LB” Herbert, PhD
Executive Director, Research & Analytics – Health Union
November 25, 2015

As we know, the holidays can be a wonderful time to celebrate, spend time with friends and family, and hopefully enjoy some downtime. In fact, almost everyone who participated in our survey said they plan to make the time they spend with friends and family extra special during the holiday season! Unfortunately, the season can also be stressful, particularly for individuals living with a chronic condition.

Health Union recently surveyed over 600 members from several of its communities to understand both the challenges and enjoyments that patients with chronic conditions experience during the holiday season. Among the four condition groups surveyed, Migraine, MS, RA, and COPD, there were many similarities in the struggles these individuals face, as well as their coping techniques during the holiday season.

“Almost all respondents reported that they enjoy spending more time with their friends and family during the holiday season (97%). However, at some time over the holiday season, they will put on a happy face and try not to let others know how they are feeling (95%).”

8 out of 10 individuals appreciate that the holidays give them a reason and opportunity to get out of the house. At the same time, 46% of individuals find traveling long distances to be a challenge, and 60% have trouble dealing with the cold weather this season brings.

With all of the events, activities and chores during the holidays, it’s not surprising that 68% of patients with chronic conditions have trouble getting enough rest, and 96% find their pain and/or symptoms worsen. The hustle and bustle of getting the house in order is also a challenge – 73% struggle with cleaning the house and 59% with cleaning up after a party. Half of respondents noted that hosting an event or holiday party is a struggle, whereas planning an event or party is not as much (28%). Over half face difficulties with holiday cooking or baking (61%), as well as decorating for the holidays (49%) – which many miss out on. However less than 1/4 hire third-party help for assistance with such tasks.

Over half of our respondents cite issues with finances and expenses (55%) during the holidays, but not many work extra hours or a job to supplement their income. The physical act of shopping for gifts is a challenge, as well as food/grocery shopping (54% and 49% respectively). Of those who find gift shopping an issue, 87% will shop online. Those with RA were more apt to report gift wrapping as a challenge (47%) as compared to 31% of their counterparts with other conditions; however less than 20% of those surveyed anticipate using a gift wrap service this year.

Those with “invisible illnesses” such as Migraine, MS or RA cite higher levels of resentment from friends and family since they are unable to fully participate in the holidays (62%), as compared to those with COPD (51%). 71% of all respondents recount that their friends and family offer to help them more so during the holiday season, and respondents are apt to delegate tasks to their family members to some extent (80%), more so than friends (58%) this time of year.

Most respondents note that their friends and family spend more time with them during the holidays (86%). However, 57% report attending holiday events or parties is a struggle – particularly for migraine sufferers who cite issues with holiday lights, holiday smells and the noise of a large crowd at a party. It’s not surprising that 93% of those with chronic conditions report they will skip attending a party or event this holiday season, with 89% feeling guilty about missing out on such occasions. While nearly all respondents (96%) will make the time they can spend with family or friends extra special, 74% of feel that friends and family don’t understand why they miss out.

89% of all respondents worry about disappointing others during the holidays; for those impacted, the worry of a potential migraine or RA flare coming on during a special occasion can be a stressor in itself. Many respondents reported experiencing more depression during the holidays than they do throughout the year (79%), with 77% of these impacted individuals receiving additional emotional support from friends and family. Unfortunately some individuals mentioned their family as a source of stress at the holidays due to their lack of understanding about their condition.

The holiday season brings special foods and drinks, but those with migraine often find that these indulgences are a challenge, most likely because many holiday foods could be a trigger for their migraines. 38% of migraine sufferers struggle with being unable to partake in holiday food, as well as alcoholic beverages; whereas most of their RA, COPD and MS counterparts are able to partake in the treats that come with this time of year (only 18% struggle with alcoholic beverages and 15% with eating holiday food). Luckily 3/4 of all respondents will make time or pamper themselves during the holiday season and almost all will try to rest or nap when they can.

“These survey responses can serve as a helpful reminder to slow down and take a few moments for ourselves this holiday season – especially for anyone dealing with a chronic condition.”

With the flurry of activity and/or feelings that can accompany this time of year, it’s even more important to understand individual limitations and pace accordingly – planning well in advance and spreading out activities and chores. Happy Holidays and a Wonderful New Year from Health Union.

The online survey gathered insights from 616 respondents; 112 from Migraine.com, 264 from RheumatoidArthritis.net, 134 from MultipleSclerosis.net, and 106 from COPD.net. Most respondents were female (94%), ranging in age from 20 to over 75. Over half of respondents were diagnosed with their chronic condition more than 5 years ago (52%). Among those surveyed, 68% were married or in a committed relationship and 78% had children; of those with children, most had children over the age of 18 (67%). On average, respondents celebrated 4 holidays this time of year.