Life with MS During the Holidays
We recently asked our community members to participate in a survey about how they handle the holidays, and over 100 people shared their thoughts and experiences with us! First and foremost, we want to say thank you for taking the time to provide your feedback and help us better understand the unique experiences associated with living with MS during the holiday season. 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 like MS.
More than half of those who took our survey indicated they don’t find the holidays to be any different than other times of the year, but the vast majority did say that their pain and symptoms get worse due to the stress and extra activity. Tasks like cleaning, preparing to host an event, and cooking and baking can all add to a person’s stress level. Despite the stress associated with these additional tasks, only 1 in 4 said that they hire outside help for assistance with these types of activities. This of course makes sense, given the added cost of hiring someone for assistance; the good news is, many people said that they take the “one day at a time” approach and only take on those tasks that they can do and they try to keep a positive outlook throughout the holiday season.
Not surprisingly, most people said that issues with finances and expenses affect them this time year. One in 4 actually work extra hours or take on a job to supplement their income this time of year. Beyond financial struggles for gift shopping, the physical effort of such activity is a struggle for many, and food/grocery shopping is also a struggle. Many people turn to online gift shopping and gift cards to make things easier.
Perhaps it is because MS is often an “invisible illness”, but many people with MS find that their friends and family don’t offer to help more than usual, and they even feel like people even resent them for not being able to fully participate in holiday activities. This can be quite frustrating, so finding ways to let people know what you can and can’t do can help.
When it comes to enjoying the holidays, the vast majority of our members recommend resting or napping when you can, and not making any changes to their treatment regimen during this time of year. Do you have any tips for handling the holidays? How do you handle the unpredictable nature of MS and family or friends who may not understand your limitations?
The online survey gathered insights from 134 MS patients, 87% of which celebrated at least 3 holidays this time of year. Most respondents were female (89%), with an average age of 48. 57% of those surveyed were diagnosed with MS more than 5 years ago and 12% within the past year. Among those surveyed, 64% were married or in a committed long-term relationship and 69% had children. Of those with children, 40% had children under the age of 18.
How many specialists did you see before finding "The One"?