(Note: This piece focuses on the winter holidays but applies equally to other times of the year when loved ones gather together.) Chronic health problems pose a challenge to relationships any time of year. Most people don’t understand the debilitating effects, physical and mental, of unrelenting pain and illness—unless they experience it themselves or are the caregiver for someone who is experiencing it. During the rest of the year, many of us have learned to limit interactions with others in order to manage our symptoms.
But when the holidays arrive, if we’re not careful, we can find ourselves suddenly thrust into the middle of a lively and chaotic social scene where we’re expected to participate in a range of activities, often for days on end. As a result, this time of year can be a recipe for double disaster—the increase in activity exacerbates our physical symptoms, while coping with sadness, frustration, and maybe even guilt about our physical limitations gives rise to emotional pain.
No wonder many of us with health problems dread the holiday season.
We can do a lot to minimize the negative effects of the holidays on our health by being sure that loved ones know about our limitations. If you’re one of the many people with chronic health problems who don’t look sick, the burden is on you to make your condition “visible.” If you don’t take this pre-emptive action, people’s expectations of you may be way out of line with what you can handle.
Here are some suggestions for helping loved ones understand what your life is like so that all of you can better enjoy this time of year:
Share information with them from the Internet or from books.
A good way to begin to educate loved ones about your medical condition is to use a neutral source because it takes the emotional impact out of the communication. A quick web search will yield a host of organizations devoted to every conceivable medical problem. Print out select pages or forward a few links to family and close friends. Alternatively, if you have a book about your condition, photocopy the pages that cover what you'd like them to know about you. In your accompanying note, keep it "light"—you could joke that "there won't be a test." But also make it clear that this favor you're asking is important to you.
In person, by phone or email, let loved ones know in advance what to expect from you during the holidays.
Whether or not you've shared information from a neutral source, it's good to follow-up by communicating with loved ones about what your life is like. You might start by telling them that how you feel on any given day is unpredictable. Even if you rest for days in advance, you may feel sick or be in terrible pain on the actual day of a gathering. The unpredictability of chronic pain and illness is the single hardest concept for others to understand—that we can spend weeks in full “rest mode” before a big event, yet still be virtually non-functional when the day arrives.
When communicating with loved ones, be sure that your tone is not accusatory. Use the word "I" more than the word "you." Without complaining, express how hard it's been for you to adjust to this unexpected change in your life and how you wish you could be as active as you once were during the holidays. Let them know that, as much as you’d like to participate fully, you may have to skip some events or come late and leave early or excuse yourself at some point and go lie down.
In my experience, spelling out my limitations ahead of time is helpful, not just to others, but to me, because I find it much easier to exercise the self-discipline it takes to excuse myself from a room full of people if I know that at least some of them are already expecting that I might be doing so.
This happened to me this past Thanksgiving. I had to leave the table mid-meal because I was too sick and in too much pain to continue to sit up. But I felt okay about leaving without explaining myself (so I didn’t interrupt the ongoing conversation), because I knew that my husband and my son and my daughter-in-law would know exactly what was going on with me. So, although there were others at the table who probably didn’t know why I disappeared, the fact that I knew that these three people did know, gave me the courage to do what I had to do in order to take proper care of myself.
Enlist the help of an ally.
If you find it hard to explain to loved ones in advance about your limitations, think of whether you have a close friend or family member who understands what you’re going through and ask that person to help you explain your condition to others. You could ask your ally to talk to loved ones on your behalf or to be present with you when you explain to them what to expect from you during the holidays.
Having a neutral third party involved like this can make a tremendous difference: it can magically turn your loved ones into good and sympathetic listeners.
If your ally is present at a gathering with you, ask him or her to be supportive if you have to leave early or go lie down. You could even ask your ally to let you know if you’re wilting (as we call it in my household). It’s so helpful for me to be “prompted” by my ally (my husband) because, when I start to overdo things, adrenaline kicks in which fools me into thinking I’m doing fine. But using adrenaline to get by just sets me up for a bad crash later on.
Think long and hard before you decide there’s no such person in your life. Your ally may be a close friend or family member who’s just waiting for you to enlist his or her help. That said, if you have no ally (I know that’s the case for some), I can be your ally via this article: if you think it would be helpful, send the piece to those you wish would understand your circumstances better.
Recognize that some loved ones may never accept your limitations, and resolve not to let that cause you to doubt yourself.
Some family and close friends may never accept that you’re disabled by pain or illness. I know this from personal experience and it hurts. Try to recognize that this inability to accept how you are is about them, not you. Don’t let their doubt make you doubt yourself. Your medical problems may trigger their own fears about illness and mortality, or they may be so caught up in struggles of their own that they’re not able to see their way clear to empathize with you.
Just as we can’t force people to love us, we can’t force people to accept us as we are. I’ve found that getting angry at others when this happens just exacerbates my symptoms. The Buddha said that when we direct anger at another, it comes right back to us—like fine dust thrown against the wind. That’s why it’s important to protect ourselves by not letting others’ lack of understanding upset us.
The physical suffering that accompanies chronic pain and illness is hard enough to endure without adding emotional suffering to it. When I feel misunderstood by family or close friends, here’s what I do:
My heartfelt wish is that your loved ones come to understand and accept your limitations, but that if they don’t, you’ll be able to accept them as they are without bitterness.
© 2012 Toni Bernhard. Thank you for reading my work. I'm the author of three books:
How to Live Well with Chronic Pain and Illness: A Mindful Guide (Fall 2015). The theme of how to educate others about chronic illness is expanded on in this book.
Visit www.tonibernhard.com for more information.
You might also like "When Poor Health and the Holidays Collide."