Posted by: Abby Caplin on: December 16, 2009
“But you look so good!”
If you type in these words into any search engine, you will find that this frequent exclamation makes people with chronic illness positively simmer!
It all starts with the word “But.” Here’s an example:
You’ve just told your friend that you have been dealing with a chronic illness (ex: multiple sclerosis, inflammatory bowel disease, diabetes, cardiac disease, fibromyalgia, etc.)
Your cheeks are rosy, perhaps from Prednisone, makeup or your natural complexion. You have a light in your eyes, because you are happy to see your friend. Then, presumably to help you feel better, your friend says:
“But you look so good!”
“But.” But what? But you are really not as sick as you say? But you look completely healthy, so you must be exaggerating your experience? But what I see is more real than how you feel, so you are a bit neurotic?
The “but” negates all of your experience.
I’ve learned to say, “Yes! Thank you. I wish my insides would look as good as my outsides!”
Perhaps it would be more helpful to say, “Oh, you really mean ‘and.’ And in spite of what I’ve been dealing with, I look good! I appreciate that. Thank you!”
Posted by: Abby Caplin on: December 10, 2009
My mother always used to tell me: “The cemeteries are filled with indispensable people.” She’d tell me this when I took myself too seriously, when I thought I needed do everything (perfectly, of course) by myself. I thought she meant that the cemeteries were filled with people who had worked themselves to death, because they really believed they were indispensable. Ha-ha. The joke was on them, because there they were, well—“dispensed.”
Later I discovered that she had been quoting Charles de Gaulle’s “The cemeteries are filled with indispensable men.” I don’t know when or in what context he made this statement, but I’m guessing it had to do with war, and he was honoring the value and sacrifice in good men giving their lives.
In any case, I like my mother’s interpretation. I understand it. I know many of us live as though we are indispensable, and the truth is, this does not often serve us, or our health. Taken to an extreme, this behavior has the potential to cause a downward spiral.
Psychotherapists Hal and Sidra Stone talk about the idea of an Inner Pusher in their book Embracing Our Selves. The Inner Pusher is an energy system that exists in all of us in varying amounts, and it gets us to do things. We enlist the Inner Pusher to do what we really don’t want to do, to do what we “have” to do, or “should” do.
Sometimes the Inner Pusher helps us function—go grocery shopping, stand in line in the DMV, pay bills. Sometimes, though, the Inner Pusher can run those of us with chronic illness into the ground.
You might want to look and act as normal as possible, perhaps even better than normal, and pull the wool over other people’s eyes. You might even believe you’ll convince your body into behaving normally if you do this. Unfortunately, I haven’t seen my clients succeed using this method. Too often they come to me in the midst of a downward spiral, because their Inner Pushers have gotten out of hand.
To recover, you need to understand that you actually HAVE an Inner Pusher, and that you are in charge of how you use its energy. If you let your Inner Pusher take over, letting it think it’s in charge of your life, then you’ve turned your body over to a destructive force and “indispensable” energy.
To help get yourself out of this situation, I recommend reading about and exploring Voice Dialogue, the practice created by Hal and Sidra Stone. It will help you understand how your Inner Pusher can be slowing your recovery!
Posted by: Abby Caplin on: November 30, 2009
I love Dr. Rachel Naomi Remen’s teachings in her book Kitchen Table Wisdom. Here is one of them:
“The life in us is diminished by judgment far more frequently than by disease.”
Do you worry about what other people are thinking when you tell them you are living with chronic illness?
I used to. I worried that I would be seen as weak or worse—lazy and a failure (all of these are judgments), especially since my illness was not clearly visible. And the natural response for many people was to offer me assistance, often in the form of unsolicited advice. They usually meant well, but the unspoken message I got was that if I didn’t take their advice, then it meant that I probably wanted to stay sick (another judgment).
Truly such judgments can diminish the life in us. We do this to ourselves, too, through self-judgment, making the healing path unnecessarily difficult. We might believe that if we can’t “do” the things we did before, that we are failures. This is judgment, with a capital “J,” and it is nonsense.
About 20 years ago I walked by a window and saw an embossed metal paperweight. It read, “What would you do if you knew you could not fail?” I had to think. What did I want to do, but fear of failure held me back? What negative self-judgments were preventing me from living my life?
This is the challenge and opportunity of chronic illness.
Within reason, of course, what would you do if you knew you could not fail? Might you be willing to act in the world as if you could not fail? It takes courage to manifest your dreams, but the result is you get to live a much better life!
I bought the paperweight. When things get difficult, I hold it in my hand, determined to act without fear of failure, knowing failure is part of life’s journey, but that I am not a failure, and neither are you!
Posted by: Abby Caplin on: November 24, 2009
For help with Thanksgiving, please follow the detailed instructions below:
Breathe in.
Breathe out.
Breathe in.
Breathe out.
Breathe in.
Breathe out.
Breathe in.
Breathe out.
Good job!
Posted by: Abby Caplin on: November 21, 2009
When I give talks to groups of people dealing with chronic illness, I suggest to the audience that some doctors might be a better “fit” for some people than for others. This way I don’t offend anyone. But most understand through experience that some doctors are, unfortunately, arrogant and disrespectful towards their patients. I remember being rudely treated by a specialist I was sent to see when I was a teenager. I witnessed bad behavior towards patients first-hand as a medical student. Unbelievably, I have still been treated rudely on occasion, even though the physician knows I am one, too!
As patients, we can sometimes find ourselves in a double bind. We may feel we need to continue to see the arrogant doctor to get the “best” medical care. If we move on because of his or her bad behavior, we may worry that we are doing so at the expense of our future health.
A good short memoir that addresses the double binds patients may experience is called At the Will of the Body: Reflections on Illness, written by medical sociologist Arthur W. Frank. As he deals with a heart problem and then cancer, Frank chronicles what he notices about himself, the healthcare system and the situations he must confront. The book is also filled with gems of wisdom about how illness challenges us to find meaning.
I’ll address this topic more in future posts. For now I’ll just say that you have the right to be taken seriously and treated with respect. I know it can be hard to stand up for yourself, especially when not feeling well, but would you tolerate disrespectful behavior from a supermarket cashier? Wouldn’t you ask for the manager? If the manager was also rude, would you return?
You have the right to discuss perceived rude behavior with your doctor. Of course, I recommend doing so in calm and civil manner, and with the understanding that this is about your self-care. Sometimes the problem may have been a misconception or an unavoidable circumstance. If your doctor doesn’t want to listen, becomes defensive or doesn’t change, then you have the right to move on. You don’t need anyone’s permission to do so.
Posted by: Abby Caplin on: November 12, 2009
Even with all of the horror and sadness in the world, we must still make time to laugh. We need to laugh often, daily, like taking a dose of medicine. It’s something so basic to healing. We all know this. Why don’t we consciously use this tool?
Of course, your sense of humor might be very different from mine. That’s OK.
I keep a “get-well” card in my files:
A doctor lies in a hospital bed while three other doctors (who all look exactly like him) stand at his beside. They are pointing their fingers at him and laughing. The doctor in bed looks angry. The caption reads:
“Laughter is the Best Medicine!”
I have learned to collect things that make me laugh, like this get-well card. I look for new films, DVDs, audio recordings, books and photos. I look on YouTube. I try to be proactive about this. I’m aware of how laughter changes my body chemistry and helps me heal.
Here’s how you can begin your collection:
1) You can ask your friends to help. People LOVE sharing these things. And it’s OK to not like what they give you. You can always return the offering with, “Thank you! Yes, it is funny [uh, to them]. It’s close, but not quite what I’m looking for.”
2) You can visit the library. But here’s the rub—it may not have a humor section! Instead, your eyes may scan the shelves and inadvertently land on copies of The Trial or No Exit. Don’t get distracted! Ask the librarian for help. I once asked a librarian to help me, and she was sending me books for the next six months.
3) Go to a bookstore that has a humor section. If you read the first few pages of a book and realize that you are NOT laughing, then put the book back. For you, that author is a doofus.
Now let’s say you pick up a book, read the first few pages, and you feel a little uncontrollable chuckle thing happening in your body. Let’s say the author of that book you’ve chosen is by—and I’ll just randomly choose a completely random name here—I’ll call him “Dave Barry.” Let’s say this “Dave Barry” has written a few books. I would recommend that you buy only one, and that way you can make an outing of buying another book by “Dave Barry” in the future, while avoiding the pitfall of saturating yourself with too much “Dave Barry” humor all at once.
And don’t let your famous “inner critic” ruin your good time! This is where the rubber meets the road of self-care.
Posted by: Abby Caplin on: November 7, 2009
This week I went to a conference where Sylvia Boorstein spoke. She asked the audience about our “practices”—-not where we worked, but about which daily “mindfulness” routines we were using.
People raised their hands. One woman practiced yoga, another Tai Chi. Others sat quietly for at least 15 minutes a day.
I’ve tried out lots of practices (Yoga, Tai Chi, sitting meditations, etc.), but I had to think. What was my practice NOW?
I suddenly recalled an experience that happened to me a few years ago. I was driving out of a hospital parking garage, having just come from a routine appointment. I don’t find medical appointments particularly fun, and I was probably thinking about that test I had to return for the next morning. As I pulled up to the parking attendant’s booth to hand her my ticket, I saw her do a double take when our eyes met. She quickly emerged from behind her glass, came to my car window and leaned in.
“Oh, Honey!” she said. “I’m so sorry. It must be terrible. Let me give you a hug!”
I was stunned. Did my face look that distressed? What message was I putting out? I hadn’t gotten “bad news.” I was functioning. I was driving, for heaven’s sake! I had a warm home, food, clothes and family. I even had a healthcare support system that would allow me to get the test I needed!
I could see, hear, walk, talk, breathe. I didn’t even have to work in a parking garage ticket booth.
I took the hug, but I felt guilty all day. Based on what she thought I was dealing with, I didn’t really deserve it.
So since then, I have cultivated a “face practice.” Several times a day I check in with myself. What message am I putting out through my facial expression? Does it truly reflect my inner feelings and circumstances? If so, how bad are they—really?
If I intuit that I’m thinking “small,” distressed and “in it” (meaning I am letting aggravation consume me), I think about rearranging the muscles of my face. I become acutely aware of my vision, what I see. Not everyone can. I listen, enjoying the fact that I can actually hear. Not everyone can. I take a deep breath. Not everyone can.
As I do this, my facial muscles rearrange themselves. Sometime I top my “face practice” off with the thought, “Thank you!” and I notice my lips curving up at the corners.
And thank you my sweet and loving parking attendant. You are such a healer.
Posted by: Abby Caplin on: November 1, 2009
As I was redesigning my medical practice, a teacher advised, “Abby, beware of the brain drain.”
What is brain drain?
As I journal, I become more aware of it.
Is it that form I haven’t filled out yet? The aunt I need to call? The last time I thought I put my foot in my mouth?
Journaling for 10 minutes a day can help you identify what has been in, and on, your mind. I’ve learned that it can take only one annoying matter to create a brain drain that becomes an energy sinkhole.
Once the brain drain is identified, try to figure out the best way to stop it as easily as possible. Filling out even a single line a day eventually gets the form completed. The presence of a friend to help you can also make a difference. Where a lengthy phone call is anticipated, perhaps a card would suffice. If you need to call someone to clarify if, in fact, you did put your foot in your mouth, then pick up the phone and ask.
Think of it as taking a mental shower. Cleansed, you can move on and enjoy the fact that you have accomplished what most needed your attention. Your whole body enjoys the benefit of stopping the brain drain, with its unrelenting (and often subconscious) drain of energy on your body.
And you need that energy, because it takes a lot of energy to heal.
The other things can wait!
Posted by: Abby Caplin on: October 23, 2009
“Getting Fit”
I find it so irritating when people tell me I have to exercise. Sometimes it can feel like climbing a mountain just to climb onto my little elliptical machine.
As a teenager, I was lucky to take a few years of dance class with famed modern dancer Bella Lewitzky. I even signed up for a jazz dance class during my medical training, but I had to drop it. My getting to a 6:30 PM dance class once a week just wasn’t possible.
Then I got sick…
For years I was sad about letting go of that part of my life. Truthfully though, what I missed most were the soft black leotards and the dancer-pink footless tights! Then it dawned on me—why couldn’t I still have them?
I dreamed of a dance outfit for over a year, but I was too embarrassed to enter a dance apparel store. Finally I decided to just get it—despite my awkwardness and the critical looks from the fit young salesgirl. (This was pre-Internet days, so I couldn’t simply order them online.)
When I got home and put on the leotards, I could see a bit of my former self in the mirror. I began to move slowly, extending my arms, bending at the waist. My legs began to move also, toes pointing and flexing automatically, naturally. I put on some music and pretended I was in class again.
I still have my outfit. Actually, I have two! I use them as a psychological tool to help me get moving and stretching.
I know as a doctor I’m supposed to advise people to “get fit.” But this can be so hard with chronic illness.
I say, “Get the outfit!”
Posted by: Abby Caplin on: October 18, 2009
How to approach this delicate topic?
I’ve met lots of people who have trouble with the idea of going to see a movie alone. If you fall into this category, believing you should only see a movie with someone else, then you are really denying yourself an important healing tool.
I love going to the movies by myself. I love going with others of course, but it’s similar to the difference between watching the beautiful scenery go by while driving alone or with a friend.
Here’s how to do it:
Check for the closest theater and decide what upbeat, heartwarming and/or well-acted movie you will see. Write the name of the film and start time in ink in your calendar.
Plan for the earliest show in the day.
If you have minimal energy, just put on a hat (assuming you are rolling out of bed), basic clothes and shoes. You won’t have to worry about meeting anyone you know because, of course, none of your friends would be caught dead in a movie theater alone in the middle of the afternoon!
Advantages:
You are generously supporting your local movie theater.
You are out of your home and around others.
You are doing something fun for yourself!
You practically own the entire theater and can sit anywhere.
You don’t need to worry about anyone else’s expectations.
Make sure to bring nice comfy warm socks so you can put your feet up!
It’s completely OK to do this. I give you permission!
