Living with chronic illness during the holiday season

In the U.S., we’re getting ready to celebrate Thanksgiving. Soon, people around the world will turn their attention to the holiday season. Chronic health problems can take a toll on relationships any time of the year. Most people have to experience unrelenting pain  or illness themselves before they understand how debilitating it is, physically and mentally. Loved-ones (by whom I mean family and close friends) may be in some form of denial about what’s happened to you, or they may be scared and worried about the future. Bottom line, suffering from a chronic condition can be an ongoing crisis—for you and for those you’re close to.

That crisis can come to a head during the holidays when people’s expectations of one another are high and when stress levels for everyone are likely to be off the charts for any number of reasons—health, financial, relationship issues. If you’re like me, during the rest of the year, you carefully limit interactions with others in order to manage your symptoms; on a typical day, your most complex decision may be to choose between showering and shopping! But when the holidays arrive, you’re suddenly thrust into the middle of a lively and chaotic social scene where you’re expected to participate in a range of activities, often for days in a row. A bit of advance warning to loved-ones can go a long way toward minimizing stress levels over unrealistic expectations.

I know that this piece won’t apply to everyone. One of the heartbreaking consequences of living with chronic pain and illness is that some people are unable to be with loved-ones at all during the holidays, either because people are too disabled by their pain or illness to be able to gather with others, or because family and close friends having drifted out of their lives. I know the pain of that isolation; I’ll be writing about it in my next piece.

For those of you who are able to gather with others, the holidays can be a recipe for double disaster—the increase in activity exacerbates your physical symptoms, while coping with sadness, frustration, and maybe even guilt about your physical limitations gives rise to emotional pain. No wonder many people with health problems dread the approaching holidays.

If you’re one of the many people with chronic health problems who don’t look sick, the initiative is with you to make your condition visible. Here are some suggestions for helping loved-ones understand what your life is like and for giving them a heads-up on what to expect from you during the holidays.

Share information with them from the Internet or from books

Often the best way to educate loved-ones about chronic pain and illness 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.

Write a letter

Many years ago, two friends of mine were in couples therapy. They weren’t able to speak to each other about their marital problems without one of them shutting down emotionally and the other reacting by shouting recriminations. Their therapist told them to write letters to each other expressing their feelings and their concerns about the marriage. It turned out to be a major first step in healing their relationship.

If you decide to write a letter, be sure it’s not accusatory. In composing it, use the word “I” more than the word “you.” Without complaining, express how difficult 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.

You could briefly describe what your day-to-day life is like, including how unpredictable your condition is which means that you can’t know for sure how you’ll feel on the day of the actual gathering no matter how much you rest in advance. (This is the hardest concept for most loved-ones to comprehend—that we can spend weeks before a big event in full “rest mode,” but still feel very sick when the day arrives.)

I would end by telling them what to expect from you during the holidays—that you may have to skip some events, that you may have to excuse yourself right after eating to go lie down, that you may have to come late and leave early. 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 it.

P.S. It will be tempting to send an email, and if you have a lot of people you want to communicate with, it may be the most feasible way to reach everyone. But one thing’s for sure: people will read a handwritten letter, antiquated document that it’s become!

Find that ONE ally and enlist his or her help

If you have just one close friend or family member who understands what you’re going through, enlist his or her help in explaining your condition and your limitations. Before the holidays start, you could ask your ally to talk to loved-ones on your behalf or to be present when you talk to them. Ask your ally to be supportive if you have to excuse yourself in the middle of a gathering, or even 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 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.

Your ally may be a close friend or family member who’s just waiting for you to enlist his or her help. Think long and hard before you decide there’s no such person in your life.

In the end, you may have to recognize that some loved-ones may never accept your limitations

Some family and close friends may refuse to accept that you’re disabled by pain or illness. I know this from personal experience and it hurts. Try to recognize that this inability is about them, not you. Don’t let their doubt make you doubt yourself. Your medical condition may trigger their own fears about illness and mortality, or they may be so caught up in problems in their own lives that they’re not able to see their way clear to empathize with you.

Just as you can’t force people to love you, you can’t force people to accept you. But getting angry at them just exacerbates your own symptoms. That’s why it’s important to protect yourself from allowing their lack of understanding to continually upset you. Think of it as protecting yourself from another chronic condition: chronic anger.

The physical suffering that accompanies chronic pain and illness is hard enough to endure without adding emotional suffering to it. When I feel let down family or close friends, the first thing I do is acknowledge how much it hurts. Then I reflect on the many possible reasons for their behavior. Finally, I work on genuinely wishing them well. These three steps immediately lessen my emotional suffering.

As you experiment with these suggestions, treat yourself kindly. Don’t blame yourself if one of them doesn’t work out. Instead, give yourself credit for having had the courage to try!  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.

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversHer forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.

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  • http://twitter.com/FeliciaFibro Felicia Fibro

    I love the idea of writing a letter to the host beforehand. Thanks!

    • http://www.howtobesick.com Toni Bernhard

      Thanks Felicia. I’m glad you found something helpful in my piece! All my best to you during the holidays.

  • Anonymous

    Thanks for this, Toni.  Holidays and family occasions can be especially tricky for “people with chronic health problems who don’t look sick”.  Sometimes I think that if only we could wear neck braces or leg casts, it might really help others around us to “get it!” 

    After much agonizing, for example, this summer I had to break the news to my large extended family that I was not well enough to attend my nephew’s wedding 3,000 miles away. My son’s incredulous reaction was typical: “What do you mean, Mum?  What are you saying?  You’re actually not going to the WEDDING?!”  I suspect that because I always put on my best game face around our grown children (and most everybody else), this helps to confuse them all about the reality of my ongoing cardiac issues.  On my ‘bad days’, I have learned to lay low, stay put, and hunker down in bed. So they rarely see me unless I paste on my best happy face smile so as to appear to be my usual perky “normal” self they know and love – and I do “look normal” most days. More on this at:  “You Look Great! – And Other Things You Should Never Say to Heart Patients” – http://myheartsisters.org/2009/06/01/you-look-great/   It took a lot to convince my son (and other family members!) that I wasn’t just being a poor sport by bailing on the wedding plans.

    • http://www.howtobesick.com Toni Bernhard

      Hi Carolyn. I know just what you mean about how we try to look our best for others and then it backfires because they don’t understand our limitations when we try to explain them. I’ve also thought that it would be easier if I had a permanent cast on my body! I’m glad though that, even though it was hard, you took care of yourself and said “no” to the wedding. We know best what we can handle! Warmest wishes to you, Toni

  • Kay Meyer

    I am thankful that I saw your article here on Thanksgiving Day.  I have shared it with my family friends on Facebook and my professional contacts on LinkedIn.   I highlighted that it is not “professional” to suffer in silence, as many business leaders tend to do.

  • Kay Meyer

    Thank you for this on Thanksgiving Day!  I have reposted the link to my family on Facebook and to my professional network on LinkedIn.  I tell my colleagues that suffering is silence is not part of “being” a professional/community leader, head of the household.

  • Anonymous

    Chronic pain disability or chronic illness don’t know the Thanksgiving break and the Christmas holiday season.  The carriers of these inflictions do.  I admit that, as a professional MS women, I had the time and still have to adjust on a daily bases to the challenges inflicted on me by my disability.  I do not believe that my social well being as an included in social functions with friends and family don’t aggravate me and for sure don’t make me feel that I have to justify, apologize or explain why my limitations make them feel limited.  That’s why I was surprised when you suggested this self redeeming process of writing letters to friends and loved ones to explain their uncomfortable feelings in your presence.  I thought that this was such a waste of time and effort.  On the other hand, who am I to judge how much you value your social well being?  Who am I to judge that your loved ones need to be accommodated more than you?  I concluded that this is because you are a better person than I am, because it is irrelevant whether Aunt Trudy is aware of your day to day suffering and challenges and suffering.  Only you know the pain.

    • http://www.howtobesick.com Toni Bernhard

      I got the idea of writing a letter from a chronically ill friend whose mother was not being supportive — just telling her to get off the couch and exercise. Speaking to her mother about her illness didn’t help. So my friend wrote her a letter, covering many of the points in my piece. Now her mother is her greatest support and this has helped my friend to manage her illness better. So, I think it can be helpful which is why I suggested it. Of course, only we know if it’s the right thing to do with particular people in our lives. All my best to you, Toni

  • http://pulse.yahoo.com/_UDJTUH45CFUC6LKCBLB6FGRDKU Diane

    Last year I finally sent the Christmas letter I had started writing several years ago with various quotes about headaches as the openings to the events of our “pitiful” family life (as I now see it compared to what it once was and to all the other exciting ones we get) and a newer version on a more explanatory note telling people about my chronic migraines and pretty much why I had become the recluse non-writer. When my twins were young and before they were born, I loved to write long letters, take pictures and send lots of letters and photos to all of our extended, spread out family. That pretty much came to a stand still when my pregnancy-induced migraines started out of the blue and gradually became almost daily by the time the kids were in kindergarden and I went back to work PT and I had to “pick my energy battles”. With good treatment, I’ve found relief and while I didn’t keep my promise to myself to resume my monthly writings, esp to the older family and friends and it was almost a joy and cathartic to offer an explanation of sorts.  It was amazing how many people used to ask where my letters were and how I carried that guilt, esp for the older people in my family.

    I do know this whole issue is big not just at the holidays but year round for families though. Often the holidays are worse b/c you are expected to entertain or think enough to buy presents and clean house and decorate. I have the same issue every summer just when I am working the most filling in for vacations and my kids have a summer birthday and everyone comes to visit us. This summer I not only had the problem with migraines but an undiagnosed heart problem I thought was asthma. So I had a very hard time breathing in the hot, humid weather. We live in the southeast and my sons play lacrosse and baseball and my husband and I play softball and we have tickets to the local minor league baseball team. Thru no fault of my own, I just could not be out in the hot, humid sun at all or I felt like I was suffocating, nauseated, dying. My family wasn’t buying it one bit – kids don’t understand, husbands get annoyed, mom who feels awful gets mad – mad at herself, the doctors, the world, being dealt a bad hand, and her husband for not understanding.

    I am only about 6 weeks into new medication to help the heart. But I’m the kind of person that as my husband says, wants “instantaneous gratification”. Well, don’t we all when it comes to feeling better? Just this past week, my husband and I had a huge argument about my abilities and that I “shouldn’t have to ask for help” carrying in a car full of groceries when there are 3 capable males in the house sitting around watching TV. So maybe sometimes we need to write that letter to ourselves too. While we let the others know about the problems we are having, write a note to yourself and tell yourself it’s ok to ask for help. Don’t carry your guilt around about the need to rest, maybe even sleep til 10am after you get up and make your husband’s lunch and see the kids off to school and let the dogs out, or the fact that you haven’t sent your Uncle Milton a birthday card or in fact one single letter since those “Christmas” cards in January or was it February? There’s always next year….

    • http://www.howtobesick.com Toni Bernhard

      Hi Diane,

      Your last paragraph touches on one of the major themes of my book: learning to treat ourselves with compassion. So many people blame themselves for getting sick or being in pain but it’s not our fault. Bodies get sick and injured! I’ve also written a piece on how to ask for help. I’ll put the link in here in case you’re interested:

      http://www.psychologytoday.com/blog/turning-straw-gold/201106/how-ask-help

      I agree that it’s not just at the holidays that we need to try and get others to understand how difficult things are for us — sometimes being sick can feel like a full-time job. There’s so much to deal with not just with ourselves but with others as we try to get them to understand.

      Warmest wishes,
      Toni

  • http://pulse.yahoo.com/_FO4LS7SFGNIBBADOO23CADHAJ4 W Cecil

    I have problems in lower spine. moderate neuropathy in one leg and worse in the other leg and lymphodema in the worst leg. There are days that I can hardly move or stand and on those days I do not care to go out or visit (especially since I am in pain 24/7). I have family and friends who ask why I want to be a hermit and why don’t I suck up and go out every day. If there were only some way to make them suffer for one or two days then they might understand. Even my spouse does not understand completely.

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