Posted by: Abby Caplin, MD | December 21, 2010

Chronic Illness and the Holidays

Chronic illness and the holidays: fielding the inevitable questions.

Below is an article I recently wrote for the CCFA e-newsletter. I’m reposting it here—perhaps it can be of help to you. It is written specifically for people with IBD (inflammatory bowel disease) but the boundary-setting technique can be easily adapted for other illnesses.


At the holiday party Aunt Rose asks you in her best “poor dear” voice, “And how are you?” The tone is meant to sound sympathetic and confidential, but the question is audible to everyone in the room. You feel like a loser.

Cousin Betty is serving the salad. “Oh, dear. Is this something you can eat? What about the nuts? You can’t eat nuts, right?” she says. Ears perk up around the table, as you and your bowel become the table centerpiece.

As you explain to the other guests that you have a condition that prevents you from eating nuts (or whatever it is you can’t eat), the diners want to know more. “What is your condition? What is ulcerative colitis? What is Crohn’s disease?” they ask. At times a guest will persist, despite having been told that it’s your intestine that’s the problem. “What exactly are your symptoms? “ he asks, oblivious to his intrusive question.

What is a person with IBD to do? How do you respond?

Many people don’t want to be put on the spot like this, and when they are, they don’t want to be rude. If you feel this way, deciding how to respond can be a stressful balancing act. It helps to plan ahead!

What is the one question you fear you will be asked? Write it down. How will you respond? How much do you want others to know?

In any situation where other people are involved, an important psychological concept to be aware of is “boundaries.” You define your psychological boundary by deciding what information is within your purview and what is not available to others. For example, someone asks you how you are doing. It’s a simple question, yet how you choose to respond can feel overwhelmingly complicated. Perhaps you are feeling well, or perhaps you have been miserable and in pain. You need to think ahead. Do you want that person to know how you really are? How much do you want them to know? Do you think that person needs to know?

Determining and setting your boundaries—the line between your rightful psychological space and others—is a wonderful way to preempt the stress of the holidays. You can relax, knowing that you have done your homework and are prepared to meet the challenges you will face. You can even have fun with it!

To start, determine what you want. What is your boundary? Write it down.

Examples of boundaries:

  • “My health will not be a topic of conversation at this gathering.”
  • “I will share information only with certain friends.”
  • “I will not allow anyone to put food on my plate and push me into eating something I don’t want to eat.”

You can expect that others will attempt to cross your boundary at any gathering. This is normal and natural. You need to position the boundary for them—they don’t know what or where it is! To help the process, it is important to be prepared with appropriate answers and tactics that are kind yet effective.

Let’s say you’d rather your health not be the centerpiece of conversation. Here are some possible actions you can take:

  • Speak ahead of time with your closest relatives and friends, and let them know what you want. You could say something like “I know the topic of my health will come up. I don’t want this to be a focus. Please help me divert the conversation to something else. Can you do this with me?”
  • Prepare vague answers that will leave the questioner feeling appreciated, then divert. For example: “How are you, really?” an acquaintance asks. “Oh, I’m better. [vague answer] Thanks for asking. [appreciation] Let’s talk about it later, OK? Not here. How are you?” [diversion]

Let’s say Uncle Ted says, “So, tell me about your health. Are you still having that trouble with, uh, what’s it called?”

What is your boundary with Uncle Ted? Know this ahead of time. Below are some possible boundary decisions with suggested responses for each:

  • A. You want him to know all about it. Tell him.
  • B. You want him to know, but the time and place doesn’t feel comfortable. “I really want you to know. Let’s talk about it later, though, OK?”
  • C. You know he doesn’t really care, and it’s none of his business. “Oh, it’s got a long name, but things are under control. [vague answer] (Consider sending him a little wink.) Thanks. [appreciation] What’s up with you, Uncle Ted? How’s your business doing? Are you going on vacation soon? Do you still have that great car?” [diversion]

Again, this useful method consists of using vague answers, briefly expressing appreciation, then diverting the conversation with questions of your own. With a bit of practice, you’ll find that you are in control. You can even approach the exercise of setting your boundaries as a bit of a game, and have fun playing it!

Back at the dinner table, Cousin Betty is still worrying about the nuts in the salad. You might want to give her a big smile and say, “Please don’t worry about a thing. I’ll take exactly what I need. It’s all good!”

Happy holidays!

Abby Caplin, MD practices Mind-Body Medicine and Counseling in San Francisco, and is a member of CCFA’s Northern California Chapter’s Community Medical Advisory Committee (CMAC). She specializes in working with people with life- challenging illnesses, such as Crohn’s disease and ulcerative colitis, to lead empowered lives that promote healing.

Posted by: Abby Caplin, MD | September 15, 2010

Healing Journeys’ “Cancer as Turning Point”

Jonna Tamases

Once in a while, an incredible opportunity presents itself for people living with chronic illness. The whole experience can be very discouraging, but occasionally there are benefits. A conference entitled “Cancer as Turning Point, From Surviving to Thriving,” sponsored by Healing Journeys, is a great example.

The purpose of this conference is to “inspire, connect, and celebrate all whose lives have been touched by cancer or any life-altering illness.”

I attended “Cancer as Turning Point” several years ago and came away completely inspired. It is an inclusive conference, for people living with cancer as well as any life-altering illness, their partners, friends, supporters and healthcare providers.

The next conference will take place October 9 – 10, 2010 in San Mateo, California.

Here is the link: http://www.healingjourneys.org/cancer-as-a-turning-point-san-mateo-overview/

Incredibly, “Cancer as Turning Point” is free.

(If you want to pre-order a boxed lunch, it costs $15.)

More information from Healing Journeys:

Presenters include Abraham Verghese, MD, David Spiegel, MD, Jonna Tamases performing “Jonna’s Body, please hold,” Sista Monica’s choir, plus many more. Pre-registration is recommended.

For registration and information  www.healingjourneys.org. or call Healing Journeys at (800) 423-9882.  Continuing education credits are available for a fee for RN, MFT, and LCSW.

I hope you’ll be able to attend!

Posted by: Abby Caplin, MD | July 5, 2010

Registration is Open for Mind-Body Health Writing Class

For those of you who live in San Francisco….
Registration is now open for this Fall’s Mind-Body Health Writing Class!

For people with chronic health challenges

Location: BookShop West Portal, San Francisco, California
If you are living with illness or health challenges and would like to be more proactive in your healing, please join me!

  • Connect with others
  • Find your direction and inner strength
  • Engage life-affirming methods using the power of the pen
  • Explore in a place of acceptance
  • Get in touch with your resilience
  • Uncover meaning
  • Spark your creativity
  • Bloom!

I will guide you through a process of reflection, writing and optional sharing. Come with an open mind and notebook.

When:
Five Sunday Evenings 7:00-8:30 PM
September 12, 19, 26 and October 3, 10, 2010

Sign up early – space is limited!
Call to register: 415-255-9981
Email: abby@abbycaplinmd.com

For more information click here: BookShop West Portal

I hope to meet you soon!

Posted by: Abby Caplin, MD | June 16, 2010

An Open Letter to a Young Student with Crohn’s Disease

Last week a concerned father called me about his son, a college freshman, now dealing with Crohn’s disease, an illness that commonly presents in 20 and 30 year olds. Crohn’s disease affects the intestine, causing abdominal pain and weight loss. Because the son was striving to act “normal,” despite poor health, the father wasn’t optimistic that his son would follow through and call me.
Here is an open letter to “Zach” (not his real name), and to all the “Zach”s and “Emmas”s out there.

Dear Zach,

Your father called me last week and let me know that this year, your first year in college, you were diagnosed with Crohn’s disease, after being hospitalized in February. I can imagine how excruciating the abdominal pain and other “unmentionable” symptoms have been. All this, and you have had to juggle classes, talk to teachers, friends and relatives, explaining yourself to so many people. You have had to weather a great deal in a short amount of time. It’s not fair, and I’m so sorry.

I’m guessing that you’ve been given tons of unsolicited advice from people who mean well, who want to see you back to being disease-free and cured, but who have very little understanding of Crohn’s disease. You are also under the care of a doctor, no doubt a gastroenterologist, who has given you medication to control this disease. Perhaps you are grateful for the medicine (I hope so), or perhaps you are angry that you need it. It’s possible that you are experiencing both feelings at the same time. In my experience, personally and professionally, this is normal when dealing with chronic medical conditions. (I could have written “illness” here, but it’s a loaded term for many people, not neutral at all, and full of stigma.)

In the back of your mind, or perhaps front and center, you are probably waiting for a cure. You trust your doctor because so far he/she has done the most to help you feel better. You believe, or fervently hope, that eventually you will be cured. How can you not expect this, in these days of such wonderful medical technological advances? You’d be able to return to growing up in the normal way, free from disease and being different, back to the job of focusing on your studies, creating the life you had imagined would be difficult enough—- the exciting and demanding life of a typical college student. You want to go back to being just like everyone else and simply forget about this episode in your life. You want to be able to depend on your body again, without even thinking about it.

I understand all of this. I was already a young doctor when I was diagnosed with Crohn’s disease. In my heart I expected my doctors to cure me, though intellectually I knew it wasn’t possible., I experienced profound sadness and felt let down by my doctors and by my body. I suffered.

It took many years, but I have learned that you actually can have an impact on this disease. You can improve and have a “life,” without it necessarily being the life you thought you would have. It can even be a better life.

I recently attended a lecture given by a prominent gastroenterologist. He revealed that a multitude of individual genetic defects have been found to be associated with Crohn’s disease so far. It’s also true that just because someone carries one of those genes, it doesn’t necessarily follow that the gene is fully expressed in the form of uncontrolled illness. Many people carry genes for all kinds of diseases, yet they remain healthy. Why is this?

Well, the other variable in disease expression, aside from our genes, is our environment. In my mind, “environment” is not just our external surroundings. It’s what we put into our bodies through all of our senses—what we see, what we think, what we eat, what we hear, what movies we watch, the people we interact with and how they make us feel, the classes we take in school, the pressures we put on ourselves—-all of this constitutes our environment.

Take two plants of the same variety, looking more or less the same. They will need good soil, sunshine and water. If they are given too much or too little of what they need, they will grow differently from each other. One might look sickly with spotted leaves; the other green and lush. The environment has an impact, and we are living beings, just like plants.

Depending on its genetic make-up, each plant has its own requirements. People also have different requirements to thrive. This is the part I can help you discover. I believe it’s possible have an impact on the course of many diseases by adjusting the “environment,” both external and internal. The adjustment takes time, commitment and good follow through.

People talk about the difference between healing and curing. Curing is about getting rid of the disease completely and recovering the body that you once had. Curing is wonderful when it’s possible.

Healing is about so many other things. Healing is rich with possibility. It’s about acknowledging and working with the wound, in your case the Crohn’s disease, and learning and moving through the world to find your rightful place in it. It’s really about using the experience to grow in many ways—in mind, spirit and body. The body may always have a tendency to show a particular disease when stressed, but improvement is very possible when you adjust your “environment.”

Many people will tell you that their way to healing is best. You will have to balance both patience and curiosity as you navigate what people offer you. I believe there are many ways to heal, and your way will be as unique as your own fingerprint. You will need to discover this for yourself. At least, I hope you’ll give it a try.

I’m here, Zach, to help you in this process. I’d love help you regain your footing and discover your place in this world, so I hope you’ll call me. You have so much to offer.

Abby

Posted by: Abby Caplin, MD | April 28, 2010

Setting Boundaries

Setting boundaries is a core principle of self-care. I’ve learned this the hard way. The moment I feel better, I find myself basking in the glory of a body that doesn’t hurt, the fluidity of bones moving freely with ease, amazed that my energy seems boundless!

And then I begin to say, “Yes.” “Yes” to a meeting or two, “Yes” to “Can you just swing by the grocery store for me?” “Yes” to attending another social function. Before I know it, I’m busy, engaging in everything except self-care.

How does one commit to self-care? It takes some planning. It’s not easy, or we would be doing it all the time. The first step is to set a “boundary” in your mind. That boundary is where you choose to say “No” to a request, instead of “Yes.” Only you can make this decision, because it is your body, your health, and no one else really cares more about it than you. After all, your loved ones aren’t living in your body. They are thinking about their own lives, as they should.

The notion that you are the one who must care the most about your health may seem off. “No! That can’t be true,” you may insist. “What a disheartening thought!” But once you acknowledge this existential reality, letting it sink in, you will be empowered to start healing.

The boundary is in knowing that you have the capacity to protect the precious energy you need to heal, and the willingness to momentarily disappoint the ones you love. It can feel painful, but you are actually modeling self-care. You are teaching others, and helping them in the long run.

Below is a suggestion to help you learn (or relearn) how to set your healing boundary.

Step One:

Make a list of all the times in the past week when you have said, “Yes” but wanted to say “No.” Circle each item. Next to it write “NO” in BIG LETTERS. Say the word “No” aloud as you write.

Step Two:

Write (hopefully in a journal) your fantasy of how you would spend your day if you had it all to yourself. You might have several different versions of this day by the time you have finished!

Step Three:

Look over what you have written. Circle the items that are actually doable. Next to each item write, “YES” in BIG LETTERS. Say the word “Yes” aloud as you write.

Step Four: IN INK, write those items in your calendar.

Step Five: Do them, each time giving yourself a big hug for job well done!

Posted by: Abby Caplin, MD | March 22, 2010

Walking Meditation for Computer Addicts

Over the past few months, I’ve been busy—on my computer. Like many people today, I sometimes can’t seem to turn it off.

How many of you, I wonder, actually sleep with your computer? It’s OK to confess that you do. If you are dealing with illness, it can be a lifesaver. You can go onto a DVD rental site and get your head into another world by instantly watching a good movie. This can be a smart move.

Recently, I received a call from my friend Nitza. I could hear the wind blowing through the phone as she spoke, her speech coming out in small puffs.

“Where are you?” I asked.

“I’m walking outside in my neighborhood,” she told me. It was 8 AM. I’d already been up for a few hours, typing away in my pajamas. I was feeling cranky, since I’d been doing this for several weeks and felt like I was missing out on “life.”

“How do you have the time? “ I asked, incredulous that, with her hectic schedule, she had time for a walk.

“I don’t have time for it, Abby,” she said, “but I must do it, or I can’t handle everything else. I just throw a coat over my pajamas and head out the door. I don’t even take my purse.”

The next morning I gave it a try. It was a challenge to not open the laptop when I awoke. Breaking a habit is difficult. I put on my coat, hat and scarf, slipped on my shoes, grabbed my keys and stepped out the door. What a world!

I eventually found a rustic little path behind some homes. I felt free and happy. I was alone, it didn’t matter what I looked like, and I was using all of my senses. I was alive! I began to sing, confident that no one was around.

Suddenly a woman emerged, heading towards me from the opposite direction. Embarrassed, I stopped singing. Within seconds, she had passed me by, but not before I noticed her blue pajamas with pink polka dots peeking out!

Posted by: Abby Caplin, MD | March 5, 2010

Getting Rid of the Evidence

I think it’s time to confess what happened to me last Thanksgiving. I hope you’ll find this funny and have a laugh at my expense. If it helps you feel better, then my experience was worth it!

I think.

Little did I realize I’d need to read my own weblog for support before the night was over.

On the afternoon before Thanksgiving, I had a rare moment of pretentious kitchen creativity. It so happens that a few times a year, I feel I’m channeling Julia Child. This time I decided to make a pureed soup with a new industrial strength blender. I used fresh organic carrots, celery, cooked mushrooms, green peppers, onions, spices and potatoes. I was on a roll.

Unfortunately, the potatoes made the soup too thick. I found a box of chicken stock, and poured a bit of it into the blender. It was then that I noticed the box had expired in 2007.

I put a lot of effort into this soup. Yet the funny taste was unmistakable. After much sorrow, I took it off the stove, and my family took me out to dinner. They later left me at home and went to see a movie. But could I let it rest?

Um, no.

My desire to get rid of the evidence was so great that I dumped the poisoned soup into the sink. I thought the puree would go easily down the drain. Instead, a persistent brown fluid stared back at me. With false confidence, I went to the garage and found the plunger.

Happily, the plunging seemed to help the fluid drain away! I added more water from the tap to clear out the remains in the sink. I didn’t know it yet, but I had actually been forcing water into the dishwasher, and it had started to overflow. I was feeling smug, congratulating myself on having saved hundreds of dollars. When I finally saw brown liquid streaming through bottom panel of the dishwasher, I realized the jig was up, and hysterically called the plumber sporting the biggest ad in the Yellow Pages.

I charged down to the laundry room for towels to sop up the mess. When I turned on the light switch, though, I heard a sizzling sound and saw the lights sadly flicker. I looked up. To my horror, brown water was raining from the ceiling and onto prized electronic equipment. I dried it as quickly as I could and ran back upstairs. I began to scoop water out of the dishwasher with a mixing bowl, dumping the contents into a toilet in the next room, running back and forth with the bowl. I emptied garbage onto the floor, so I could use the bin to catch the brown rain. Finally the plumber arrived.

He informed me that snaking the sink might not work with our old pipes, and that the basement ceiling might need to be opened. He pointed accusingly at the deteriorating trap under the sink, shaking his head at my household neglect. He got a new trap out of his truck, but while replacing it, he cracked a different pipe, which then also needed to be fixed.

After I wrote the check, I closed my eyes, grateful that the sink was unclogged, and that the ceiling was intact. I collapsed into bed and searched the internet for “holiday disaster stories.” It turns out there are quite a lot of them. Strangely, I began to feel better.

Then I read my own post “Holiday Survival #1.”

Posted by: Abby Caplin, MD | February 10, 2010

Not So Subtle Energy

Energy moves, transfers, ebbs and flows.

It’s been said that if you are in large crowds and you notice yourself beginning to feel drained, then you are an introvert. If you feel yourself energized by the same situation, then you are an extrovert.

Whichever category you belong to, it’s important to recognize what sucks energy, and what gives you energy.

A few weeks ago, I was facilitating a small group of chaplaincy “students” (I write “students,” because these holy people are mostly my seniors) in a discussion about illness, healing, grief, etc. I’ll share here that for an introvert like me, a small group inevitably gives me energy.

At the end of the session, I invited people to say their names and what quality they wished for themselves for the coming week, until our next meeting. For example, they could ask for more love, joy, downtime, peace, etc. Between each person, for a few moments, the rest of the group sent a silent intention that the wish would be fulfilled.  As group leader, I was last.

I had been so focused on everyone else, I hadn’t had time to think about what I was needing. But my heart had been tortured the past few days. I had embarrassed myself by forwarding an email in a way that looked as if I had written it. Despite apologies, attempts at correcting the problem and an inner critic inflicted migraine headache, I had yet to forgive myself.

Self-compassion was what I needed, and I said this.

Within seconds I felt a WAVE of compassion flood my body, filling me with well-being and a sense of deep peace. I was powerfully and completely cleansed of the ravages of inner critic energy.

I told them what had happened, how amazed, relieved and grateful I felt.

Their response?

“Don’t mess with us, Honey. We’re chaplains!”

Yes!

Posted by: Abby Caplin, MD | January 29, 2010

Healing Souls

Bambie, Kitzeleh, Kelly, Sheba, Ruth, Cleo, Maggie, Laila, Tzipi, Sarti, Houdini, Thea.

What do these names have in common?

These are the names of my pets, past and present. Can you tell which one was the dog, the cat, the goldfish, the rat, the hermit crab, or the parakeet?

My favorite pet was Laila. She’d run back and forth, and loved to be tickled. She’d make a little high-pitched laughing chirp when I played with her. Laila belonged to the species Rattus norvegicus!

I’ve met so many people who benefit from sharing their lives with another little being. A woman once told me her story of being bedridden for almost a year. A little sparrow lived above her window, and she’d leave birdseed for him. Feeding him was the most she could manage to do at the time. After awhile, he brought his “wife” and then his babies to visit every day. Many times, even though food was available, he didn’t eat. He just came to spend time with her. She now cares for his great-great-great-great-great “grandchicks!” The important part of this story is that he continues to give her life great meaning. She knows that her relationship with this little bird helped save her.

When we allow our hearts to be touched, we can heal.

Posted by: Abby Caplin, MD | January 16, 2010

Energy Coins

Every day I wake up with different amounts of energy. The range varies, and often reflects my activity level in prior days.

For many years I functioned in a deficit range, despite illness and exhaustion. I thought it was normal to push myself beyond capacity. I’d done it for such a long time, and I was good at it. Why not keep going?

I didn’t listen to my body as it “talked” back to me through symptoms.

The truth is that just because we’ve been behaving in certain ways for years, doesn’t mean the behavior makes sense. But it’s so hard to change our habits. Others are used to us acting in certain ways, and we like meeting their expectations. They are used to seeing us with our “normal” energy.  Sometimes our self-expectations are the most difficult to manage! When we think about deviating from our usual ways of being, we can feel very uncomfortable.

One little trick I use to help myself gauge my stamina is to check in with my body a few times during the day. I like to think in terms of “energy coins,” like a stipend that I have been given, and one that I must spend wisely. In my mind, when my energy bank is full, it has ten coins. As I go about my day, I pay out to the world, slowly or quickly, depending on my circumstances.

If I wake up with, or drift down to, about five coins, I reassess my plans and make appropriate adjustments. Four coins, and I know I’m headed for at least a day in bed. I’ve found, though, that when I engage in some of the activities I’ve talked about in my previous posts, I can actually help refill my energy bank.

Please feel free to give this method a try! Let me know what happens.

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