How to Live Well with Chronic Pain and Illness

by Toni Bernhard

  Having him there is beneficial for several reasons. First, I feel less intimidated when I know I have an ally with me who can vouch first-hand for how sick I am. Second, I’ve noticed that when doctors see him, they become more attentive to what I’m saying and are also more forthcoming with information and explanations. Doctors will often look over at my husband as if they’re talking for his benefit. Sometimes when this happens, I feel like protesting, “Hey. Over here. I’m the patient. Talk to me!” but I refrain, because I’ll take a more communicative doctor any way I can.

  Third, if I’m having a tough day — a day when it’s a major accomplishment just to have dragged myself to the appointment — he can be my advocate. He can raise new concerns or changes in my symptoms that I forget to mention; he can ask questions that may not have occurred to me. When he’s there, I feel protected.

  Fourth, on the way home, I get a second opinion about how the appointment went: Was the doctor a good listener? Did he or she involve me in the decision-making? Was the doctor open to treating a “no-quick-fix” patient?

  Finally, if the appointment didn’t go well, my husband can confirm my perception that I received less-than caring or competent treatment. This validation allows me to stop second-guessing myself. Even more, it gives rise to self-compassion because, with my husband’s help, I’m able to see that this disappointing interaction with the doctor was not my fault.

  You need not take a spouse or a partner. You can take anyone whom you feel comfortable with — an adult child or a cousin or a friend. If accompanying you to the doctor is a source of conflict between you and a loved one, look again at chapter 18 where I give an example of how you could approach this very issue.

  Before you go to the appointment, tell the person who’s coming with you what you’re hoping to get out of the appointment and what you’d like him or her to be looking out for on your behalf. An extra pair or ears and eyes — and an extra brain — has been invaluable in helping me not to feel intimidated by even the most curt and brusque of doctors.

  Recall from my story in chapter 4 about how I was unable to say no to the podiatrist who wanted to give me a second cortisone shot. I’m positive that had my husband been able to accompany me to that appointment, I’d have had the presence of mind to decline that shot.

  Bring a list to the appointment.

  Seven minutes is the average amount of time you get with the doctor under managed care. Thankfully, my primary care physician gives me more time than this, but I’ve encountered other doctors who are clearly working “on the clock.” You can sense it when they walk into the room. In my experience, the best way to manage this is to bring a list of what you want to raise and have it visible to the doctor when he or she enters the room.

  I make a list of what I want to talk about and then prioritize it. The list serves several purposes. First, it helps me manage my own time so I don’t linger on one item too long, or stray off onto something I’d already decided wasn’t important enough to raise at this appointment. (As my family well knows, I can easily go off topic!)

  Second, when doctors see my list, they often prompt me by saying, “Okay. What’s next on your list?” Most doctors appreciate that I’ve thought about the appointment ahead of time and structured our time together. It keeps both of us focused on the task at hand, and they know that when we’re done with the list, we’re done with the appointment.

  Third, I learned in a book called How Doctors Think that most doctors decide on a diagnosis and treatment within minutes of seeing you. I think that my list makes them less likely to jump to a quick conclusion, because the list forces them to see me as more than a body “presenting” with a symptom.

  Finally, my list makes me feel like an equal participant in the interaction; that alone increases the odds of a successful visit.

  What if the doctor says, “I don’t like lists”? Fine. Put it down. Here’s your secret weapon though: be sure to memorize it before you go to the appointment. If the list is too long to memorize, it’s too long for one appointment anyway.

  Be sure to tell the doctor about any specialists you’ve seen or plan to see.

  It’s important to be on guard for what’s called “care fragmentation.” Unfortunately, this is becoming more and more common. You see a specialist about one particular symptom, and a different specialist about a different symptom, and maybe even a third specialist about a third symptom. However, the medical records that each doctor relies on don’t contain information about the other appointments or their outcomes. I thought this problem would be solved when my records were put online; so far, that hasn’t been the case.

  I’ve been seeing a dermatologist about a skin condition for which she’s prescribed a medication. During my appointments, after she examines me, she enters a lot of information on her computer. But whatever she’s recording is not on the computer screen when my primary care doctor and I look at my medical records, even though the two doctors share the same health care facility. Where is the information she entered? I have no idea.

  Care fragmentation can result in missed diagnoses: a skin rash being treated by a dermatologist could be related to joint pain being treated by a rheumatologist. My primary doctor wouldn’t know about these other appointments unless I told him. I hope this changes soon.

  Don’t be afraid to ask questions.

  I recommend going to every appointment with the assumption that the doctor is knowledgeable and is seeking the best outcome for you. That said, don’t be shy about asking questions, including what alternative treatments might be available. If you take an ally with you, he or she can chime in should you forget to inquire about this. Doctors are often thinking about alternatives — just not out loud. When you ask questions, it encourages them to talk to you about what’s going on in their heads — which is something you want to be a party to.

  I don’t recommend regaling the doctor with information from other sources (unless the doctor has encouraged you to do so). You’re likely to lose a doctor’s attention if you say, “Research on the internet shows… ” If you have information that you think is important, share it in a way that communicates that you think of you and your doctor as partners in your health care. Hand it to the doctor, while saying something like “Doctor, I found this article that I thought might interest you” or “I know a lot of your patients must bring you material to read from the internet, but this particular article appears to be relevant to my condition. I’d love to get your feedback on it when you have time.”

  Repeat back your understanding of the plan of action.

  When you sense your time is up, briefly describe your understanding of what has come out of the appointment. For example, you might say, “To be sure I understand you correctly, you want me to start this new medication, get a blood test in a week, and return in two weeks.” I’ve had too many appointments where I get to the car afterward and neither my husband nor I can remember some important detail of what happened. The risk of this is even greater, of course, if you’ve gone to the appointment alone.

  Don’t write off a good doctor because of one disappointing visit.

  Let me set the scene: You’ve seen this doctor before. The rapport was excellent. She was a good listener and involved you in the decision-making. You feel fortunate to be in her care. Then, out of the blue, you have an appointment at which she rushes you and isn’t focusing on you as a flesh-and-blood person.

  When this happened to me in the past, I’d jump to this conclusion: “My illness is too much of a hassle; she doesn’t want me as her patient anymore.” This reaction is an example of a type of distorted thinking called “overgeneralization.” In this instance, I was taking one disappointing experience and drawing the general conclusion that all subsequent experiences with this doctor would be disappointing.

  But life can be stressful for doctors too. This may have been a day when she was badly overbooked, or tired from lack of sleep, or worried about a family member. I used to feel personall
y hurt when a doctor with whom I had a good relationship wasn’t as “present” for me as I’d become accustomed to. Over the years, I’ve learned that if I’ve already established a good relationship with a doctor, this reaction of mine is off the mark. Now I chalk my disappointment up to he or she having had an off day. In every instance so far, the next appointment has gone fine.

  A disappointing visit might also be due to your doctor’s frustration about not being able to “fix” you. Doctors learn in medical school: examine, diagnose, fix. However, that isn’t how it goes for people who are chronically ill. If you have a good relationship with a doctor, I suggest that you give him or her some slack and accept that, some days, a hard-to-treat patient is too challenging for the doctor to handle gracefully.

  I had an insight into this several years ago. I had a circular, itchy rash on my knee that wouldn’t go away, so I made an appointment to see my primary care physician. He took a scraping and went off to look at it under a microscope. When he returned, he seemed so excited that I had something he could actually diagnose and fix that he took me down the hall to look through the microscope myself. He explained exactly what I was seeing: a simple fungus that was treatable with an over-the-counter ointment.

  This interaction — seeing how happy he was to have finally been able to help me — gave me fresh insight into how difficult my illness must be for him at times. He’s an exceptionally caring doctor, so it’s understandable that once in a while he gets frustrated that he has a patient who’s been sick since 2001 and that there’s been little he’s been able to do about it.

  When things fall apart, cultivate equanimity.

  Sometimes, despite your best effort, you may feel deflated — even inconsolable — when a doctor’s appointment doesn’t go well. I certainly have. This is a good time to cultivate equanimity: that mental calmness and evenness of temper that knows that sometimes things work out well and sometimes they don’t. This is not a passive stance but an acknowledgment of the way things are. From this place of mental balance, and perhaps after a good cry, you can be proactive and take measured, concrete steps to improve the care you’re getting (which may include finding another doctor) rather than lashing out in anger, which is unlikely to get you what you want or what you need.

  21

  Sick Upon Sick: Handling an Acute Illness While Chronically Ill

  If you want real control, drop the illusion of control; let life have you. It does anyway.

  — BYRON KATIE

  OCCASIONALLY, I come down with a viral or bacterial infection that’s not related to my ongoing illness. It might be our familiar friend the common cold. It could be bronchitis or strep throat, or maybe that most unwelcome visitor — the bladder infection. I used to think of acute illnesses as minor irritations and nuisances. More often than not, they didn’t even stop me from going to work. Now that I’m chronically ill, however, such illnesses are big events in my life. I call it “sick upon sick.” In this chapter, I’ll discuss the good, the bad, and the ugly of an acute illness settling in on top of a chronic one.

  The Bad: Sleep Disruption

  For most chronically ill people, a crucial indicator of how functional they’ll be on any given day is how well they slept the night before. This is true for me. I can sleep well and still feel too sick to do much the next day, but if I don’t sleep well, I’m guaranteed to feel too sick to do anything except rest in bed or on the couch. By contrast, when healthy people have a bad night’s sleep, they feel crummy the next day, but they’re still functional.

  An acute illness almost always brings with it a bad night’s sleep. Consider the effects of the common cold: a nose that alternates between being too stuffy to breathe through and too runny to contain; a tickly cough that seems to always kick in just as sleep is about to descend. Or strep throat: a throat so sore that the sensation of breath going across it can cause a wince. And why do bladder infections tend to show up in the middle of the night, assuring there will be no sleep from 2:00 a.m. on?

  Sick upon sick: yuck! There’s nothing to be done but follow Byron Katie’s advice and let the new illness have me. It does anyway.

  The Good: Forced Self-Care

  Like almost every chronically ill person I know, I tend to push myself rather than stay strictly within limits that might help ease my symptoms. I’ll do too much housework; I’ll spend too much time visiting with a friend.

  I can even push myself too far from the bed — at 4:00 a.m. while I’m still half asleep! Here’s how. I’ll become partially conscious and an idea for the book I’m working on will pop into my mind. Afraid that I’ll forget it if I go back to sleep, I turn on the light and take a few notes. That, of course, wakes me up sufficiently that I can’t get back to sleep.

  When I have an acute illness, though, I take much better care of myself. A messy house is the last thing on my mind, and if I get one of those 4:00 a.m. ideas, I can’t be bothered to try and get it down on paper. Instead, I say to myself: “If it’s that important, I’ll remember it later.”

  The Bad: Heightened Awareness of Isolation from Others

  Isolation is such a challenge for the chronically ill that I devote a separate section in the book to it. I know how fortunate I am to have a live-in partner who loves me and takes good care of me. Aside from his company, my socializing is generally confined to short visits once a week with my friends Dawn and Richard, although sometimes I have to cancel with them.

  When I have an acute illness, however, there’s no question — I’m cancelling. For the most part, I no longer mind being alone so much of the time. Yet having a cold or another infection drives home how cut off I am from in-person contact. This heightened sense of isolation stems from realizing that, although the acute illness will go away, my limited ability to socialize with others will not. This adds emotional pain to the physical misery of whatever temporary symptoms I’m experiencing. As I’ll discuss in the section on isolation, it’s helpful to treat isolation as a companion. Maybe not a treasured companion, like Dawn and Richard, but a companion nonetheless on this chronic illness journey.

  The Ugly: Worrying That What’s Acute May Become Chronic

  When the symptoms of an acute illness combine with the symptoms of a chronic illness, together they can feel like one big indistinguishable mess. When this happens to me, there’s a nagging concern in the back of my mind that some of the new symptoms won’t turn out to be acute; I worry that they’ll hang around and become part of the constellation of my chronic symptoms.

  To alleviate my worry, I keep a Don’t-Know Mind. This is a treasured practice from Korean Zen teacher Seung Sahn. He encouraged his students to keep a Don’t-Know Mind about their views, about other people, and about the future. After all, do any of us know what will happen next in our lives?

  Don’t-Know Mind is one of my chronic illness survival tools. When I’m dealing with an acute illness, worrying about my symptoms can trigger a barrage of stressful stories. Keeping a Don’t-Know Mind stops those stories in their tracks: “Will my throat hurt every time I inhale from now on?” I don’t know. “Will I have a stuffy nose for the rest of my life?” I don’t know. Don’t-Know Mind has a calming effect, partly because it’s so effective at revealing the absurdity of most of those stories. Do I really think my sore throat is permanent or that I’ll have a stuffy nose for the rest of my life? No!

  I can report this: so far, so good. When each acute episode has run its course, so have the symptoms that accompanied it.

  The Good: Hope

  Several doctors think that my continuing illness is due to my immune system being chronically activated. As one doctor put it, my immune system is “stuck in the ‘on’ position” — having never returned to normal after I got the acute viral infection in 2001. This means that, theoretically, something could come along that would “reset my immune system” (a phrase that several doctors have also used).

  So whenever I get an acute illness, along with “The Bad” and “The Ugly,”
there’s always the hope that when I recover, the acute illness will leave in its wake a normal immune system — and I’ll no longer be sick! One of my doctors admitted to me that he hopes for the same thing whenever I’m “sick upon sick.” It may never happen, so I don’t get my expectations up. Nevertheless, a little hope creeps in every time.

  Several years ago, I was getting acupuncture treatment — another hoped-for cure that didn’t work out. One day I told the acupuncturist that I thought I was coming down with a cold. To my surprise, she brightened up and optimistically said to me, “There’s a saying in Chinese medicine that you have to be well enough to get a cold.” I never fail to remember her words when I get a cold — or any acute illness. The logic (or lack thereof) of this saying appeals to me, and it’s a goofy enough idea that it just might be true.

  It didn’t come to pass with my last cold, but there’s always the next one. Hope.

  22

  The Pesky Issue of Sleep

  For you too, fleas, the night must be long it must be lonely.

  — ISSA

  CHRONIC ILLNESS can play havoc with those of us who try to follow traditional advice for good sleep. Hardly a week goes by without an article on proper sleep hygiene showing up during my internet wanderings. The recommendations may be good for some people; unfortunately they rarely work for a body that marches to the beat of chronic illness. In fact, some of them are downright irrelevant to our lives.

  What follows is the conventional wisdom regarding sleep hygiene, along with my reflections on why it’s unlikely to work for those of us who are chronically ill. This lighthearted analysis is based on my personal experience and on what others have told me. That said, if any of these traditional tips work for you, terrific. Keep following them!

  Conventional wisdom: Don’t use your bedroom for any activities other than sleeping or sex.

  Yes, not just your bed, but your bedroom. The idea is to get your mind and body to associate the bedroom with sleep. Here are the types of activities on those “don’t-do-in-the-bedroom” lists: talking on the phone, listening to the radio, watching television, reading, using the computer, and the big one — working.