When the Holidays are a Struggle

From Toni:

The media constantly tells us that the holidays are filled with joy and we should be happy, but for many people it’s a difficult time of year. I’m going to write about one challenge: isolation. It’s particularly a struggle for the chronically ill, but applies to anyone who, for whatever reason, feels isolated from others during the holiday season. 

After my piece, you’ll be treated to Mara’s honest and heartfelt sharing about her difficulties during the holidays: overblown expectations and worry. Then she asks me some questions.

I’m isolated due to chronic illness. Even if family or friends come over (this year our friend Richard and our goddaughter Jessica are coming for Christmas dinner), I can’t stay in the front of the house for the entire time they’re visiting. 

I used to cry after retiring to the bedroom and hearing sounds of chatting and laughter coming from the living room (and I admit that once in awhile, I still do). But over the years, I’ve developed some tools to help me cope with my life as it is.

Self-Compassion. Once in my bedroom, I’m alone so there’s only one person who can be nice to me...and that’s me. So I work on treating myself with kindness about my sadness. I pick specific words that express how I feel and I repeat them silently to myself: “It’s so hard to leave the gathering just when the conversation was getting good”; “It hurts to be alone in my bedroom on Christmas.” Sometimes, as I repeat the words I’ve chosen, I stroke one arm with the hand of the other. Stroking my arm or my cheek never fails to ease my emotional pain.

Try to feel happy for others. I also try to cultivate joy for those who are enjoying themselves. I think about the good time they’re having and try to feel happy for them. If I feel envy or resentment instead (usually in the form of “It’s not fair!”), I just keep practicing. I imagine their smiling faces and the sound of their laughter. After a time, I can’t help but feel happy for them, even if I’m still sad. And sometimes, I even start to feel happy myself, as if everyone is having a good time for me. I recently wrote a piece on feeling happy for others; it concerned an incident with Mara’s daughter (and my  granddaughter) Malia. You can read it here.

Tonglen. This is a compassion practice from the Tibetan Buddhist tradition. In the words of Pema Chödrön, tonglen reverses ego’s logic because we’re usually told to breathe in peaceful and healing thoughts and to breathe out our pain and suffering. In tonglen practice, we do the opposite—breathe in the suffering of others and breathe out whatever measure of kindness, serenity, and compassion we have to offer them.

When I breathe in the sadness and pain of all those who are isolated during the holidays and when I breathe out whatever kindness, serenity, and compassion I have to give them, I’m aware that I’m breathing in my own sadness and pain and that when I breathe out kindness, serenity, and compassion for them, I’m also sending those healing emotions to myself. For this reason, I call tonglen a two-for-one compassion practice—we’re not only cultivating kindness, serenity, and compassion for others who are alone, we’re cultivating them for ourselves.

When I practice tonglen, I feel a deep connection to others who also can’t participate fully in the holidays and so, after a while, I no longer feel alone.

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These are three practices I rely on when I’m feeling sad about being so isolated from others during the holidays. I hope you’ll try each of them and use the ones that resonate most with you.

May your holidays be peaceful and restorative.

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From Mara:

I don’t have much to add to my mom’s very helpful suggestions about isolation, but I do have my own struggles this time of year even though I don’t have a physical illness, I’ve always found the holidays to be super stressful. So stressful, in fact, that I have very few memories of enjoying them. 

I think I created too grand a vision of what I thought the holidays “should” be and was always disappointed when I couldn’t meet my own expectations. When I was younger it was about wanting more than was realistic, and when I got older it was about wanting to provide more than was realistic. 

I simply expect too much—too much of myself and too much of the people around me. And I don’t just mean presents, I mean the whole package. I want every day in December to feel like a Hollywood movie. I want there to be snow (even though I live in Los Angeles where, when you’re in shorts, it’s hard to feel like it’s a winter wonderland). I want to want to make gingerbread houses. I want to want to go to lots of parties and do amazing crafty things like creating homemade advent calendars. 

But I don’t do those things. That’s just not me. And because of this, I feel like I’m not doing the holidays right. I would love to have some snappy fix to suggest to everyone who struggles in this way, but I don’t. 

In addition, Christmastime is full of worry and anxiety for me. I worry if it will feel “good enough” for our daughter. I worry that I won’t be able to be cheery enough. I worry that people won’t like the presents I give them. I worry about money. I worry about time. I worry that I’m not grateful enough for my fortunate circumstances. It’s an endless cycle of beating myself up about things. 

I  realize that I am doing this to myself. No one is demanding anything of me, but it’s still hard for me to take a moment to just enjoy what is. 

This year, however, I am really going to try. I want to be able to enjoy my family and enjoy whatever Christmas Day holds. Because as I sit here, I’m realizing that no matter what happens, the day is going to be how it is. If the day is amazing, then hopefully I can appreciate it. If it’s awful, then we’ll get through it and we’ll wake up the next day and start fresh. My trying to force the holiday to be something it’s not will not create happiness. 

So I am going to challenge myself this year to let go of my worry. I recently read that an effective way to confront worry and anxiety is to talk to them. So when I feel anxious feelings start to build up, well, I am going to tell them to leave me alone this year. I might actually shout it at myself because I really want to stop blocking my own happiness. I’ll keep you posted on how it goes!

And just a short note to my mom: I hope you know that the fact you can’t participate in family things as much as you wish you could has never changed how we feel about you. And even though you aren’t in the room physically, you are always there in spirit. So if you cry, I hope it’s simply tears for yourself and never tears for me. Because there really isn’t anything you could do to make me think you loved me more. Your being sick has never made me feel like you didn’t love me. If anything, the efforts you have made to be a part of our lives in spite of your sickness have reinforced to me how much you love us. 

Okay, sappy part over.

I would love to hear from you guys about any suggestions you have for relaxing and enjoying the holidays. Comment below!
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Interview with Toni about coping with chronic illness during holidays:

Mara: You already briefly covered some suggestions for making the holidays a little easier for people who feel isolated, so I’m going to ask some questions about other topics:

When you feel bad about not being able to participate in family gatherings, do you feel bad because you are missing out? Or are you feeling guilty—as if you are letting down the family?

Toni: Well, I’d have to say both, depending on the situation. I often feel bad when I’m missing out—either because I can’t go to something in the first place or because I have to leave in the middle of a gathering if it’s at my house. 

For example, when all of the family was here this Thanksgiving, it was huge for all of us because the whole family is so rarely together in one place. When I ran out of gas and started feeling really sick, I knew I’d better lie down. I admit there was a little breaking of my heart to have to leave everyone. Gatherings tend to get more loose and juicy and intimate later in the evening because everyone is relaxed. But it’s also when I can’t visit any longer because I feel so awful. So, yes, I feel bad when I have to leave and miss out on the best time of the gathering.

As for whether I feel bad because I’m letting people down—it depends. I didn’t feel like I was letting all of you down at Thanksgiving because you had each other and were having a good time chatting whether I was there or not. 

But if there are only one or two people visiting, then if I have to leave to lie down I do feel like I’m letting them down because I feel like I should be a hostess. For example, Jazmín, a young woman in her early 20’s lived with us for two years when she was in college here. She’s become like family to your dad and me. She came up from the Bay Area to visit us last Saturday, and I was really sick that day. I could only stay out in the living room for two hours—and even that was pushing it. When I felt like I would pass out if I didn’t lie down, I left. She stayed for four more hours—visiting with your dad. I felt bad that I couldn’t be with her more—so yes, I felt as if I’d let her down. She didn’t feel that way, but I felt that way. So to answer your question, it depends on the situation. Does that make sense?

Mara: You’re saying the two emotions—feeling bad because you’re missing out and feeling bad because you think you’re letting people down—are not mutually exclusive feelings?

Toni: Yeah.

Mara: When you think about the holidays before you got sick, do you think you idealized them? For example, as I described above, I find the holidays very stressful. Do you think you are remembering them in a way that they never were simply because you can no longer participate the way you wish you could?

Toni: Yes and no. No, in the sense that, to be honest, the holidays lost their glow for me when I was 10 because my father died two weeks before Christmas. He was the sweetest and gentlest guy. Perhaps I’ve idealized him, but I don’t think so because everyone said that about him. For years after that, Christmas and Hanukkah (we celebrated both) had this empty feeling for me because I loved him so much and he wasn’t there. It’s amazing that so many years later I can still feel sad about it. So to that extent, I never idealized the holidays. 

On the other hand, when I think about Christmas with you and Jamal when you were growing up, I guess I do idealize it to some extent, telling myself, “All our Christmases together were fabulous and now that I’m sick I can’t do them anymore.” But if I’m realistic about it, our holidays were certainly nice but they weren’t always spectacular. What do you think?

Mara: They were nice, I mean they weren’t amazing, but they were nice.

Toni: For one thing, for many years while you and Jamal were growing up, my mother-in law came from San Francisco to have Christmas with us after my father-in-law died. She could be difficult to be with. She loved me, but she could also be blunt and even mean to me. So there were definitely some years that were stressful at Christmas time even though, since becoming sick, I can think back and convince myself that I’m missing out on what was once a perfect time. It’s interesting how we idealize the past like that.

Mara: Has the family done things (consciously or unconsciously) that made you feel worse during the holidays? (This might help other caregivers avoid behavior that they don’t realize is making their chronically ill family member feel bad.)

Toni: When I first got sick and couldn’t travel anymore, I did feel bad that you and your family didn’t come up here for Christmas. I never felt bad about Jamal not coming because he and his wife Bridgett had an established tradition of going to her parents' house in Escondido. But I felt bad that your family didn’t come up. 

But you know, part of my mental healing (which to a large extent came about through my writing—hopefully I’m helping others, but I’m also helping myself) was realizing that you’re an adult with a family of your own. Maybe you want to establish your own holiday traditions in your own home. And you have your own stresses to deal with and may not want to travel at Christmas. So I got over feeling bad and now it’s fine with me for you to celebrate Christmas however you want to.

In general, my relationship with you is that I’m ok with whatever time you want to give me because you have your own life to lead. You’re a grown woman and I shouldn’t be the center of your life. I might like to be, but I shouldn’t be!

The only other thing I can think of that has made me feel bad at times is not having anyone acknowledge that it's hard to be sick and in pain all the time. It's great to hear these five words: “I’m so sorry you’re sick.” Just having someone acknowledge that it’s hard is very comforting. So that would be nice to hear. That said, I’m not asking that of anyone in the family because you’re so good to me otherwise. But it’s something that a friend said to me a few months ago, and I was shocked at how good it made me feel. So that would be nice for people to say that to family members who are chronically ill.

Mara: Do you have any advice for people who are suffering from health problems and are feeling angry about how their family treats them during the holidays? I know we’re lucky to have a mostly understanding family. But for people whose families aren’t as understanding about what they’re going through, do you have suggestions for how to cope with feelings of anger and can you help them communicate to their families how they’re feeling?

Toni: I’ll start with communicating. It’s important to try and help your family understand what’s going on with you. They’re not mind readers. And even if they know what your symptoms are, they still don’t know what it actually feels like to have them—whether they’re physical or mental. So you should try to explain what it’s like. This is so important that in my most recent book, How to Live Well with Chronic Pain and Illness, the very first chapter is about how to teach friends and family what your day-to-day life is like so they'll understand you better. 

That said, so many people have written to me, saying that their family just doesn't understand. They tell me that they’re told things like “If you'd just get up off the couch and started doing things you would be fine.” Or “If you’re that sick, why aren’t you in the hospital?” So some chronically ill people have family members who are just plain insensitive for whatever reason. 

If that’s true for you, it’s natural to be angry about it. When I start to get angry, I rely on what the Buddha said about it: “When you get angry, it comes back at you like fine dust thrown into the wind.” This is certainly true for me. When I get angry at other people, I don’t know what effect it has on them, but I do know that it makes me feel worse and suffer more. This is because anger feels bad emotionally. And emotions are felt in the body, so anger makes you feel worse all over. You can’t always stop anger from arising, but once you’re aware that you’re angry, you can make a conscious decision not to feed it and make it stronger. 

What’s the alternative to anger? It’s accepting that people are the way they are. Whether you’re chronically ill or not, all through life, some people do what you want them to, and some don't. Some people come through for you, and some don’t. It’s important for your own well being not to take other people's behavior personally. Maybe they can’t accept your illness because they’re afraid they’ll get sick or maybe it reminds them of their own mortality. Most of the time, the things we take personally are about the other person, not about us. They’re about their own demons. So the best thing you can do for yourself is to say, “Yes, this person has let me down, but this is the way they are and I’m going to try to accept that.”  

Lastly, two important things. First, don’t let people who question your illness—whether it’s a mental or physical illness— get you to question yourself. If people tell you that you can’t be that sick or that you’re not really depressed, don’t turn their questioning back onto yourself. You know how you feel, so trust your judgment and do what you need to do to take care of yourself.

Second, if someone is treating you badly, do everything you can to stay out of their presence. You’re not going to change them. It’s not good for your health to be exposed to people who are always questioning you or who aren’t nice to you, so do whatever you can to avoid them. If you need to call on a third party to intervene, do so. It’s an act of self-care and self-compassion to stay away from people who aren’t treating you well. 

Malia and Camden (Toni's granddaughters) Christmas 2014