Читать книгу Taming Chronic Pain - Amy Orr - Страница 13

Talking to your doctor about, well, anything, can be tough, embarrassing, strained, rushed, complicated. Even the simplest problem can be difficult to talk about with someone who may well be almost a stranger. But here’s the thing: you cannot afford to treat your doctor as a stranger. Yes, you may have only met him/her a few times. Yes, you may not like them very much. But you need to be able to give them detailed, personal information so they can help you as best they can. There is no avoiding this. No one can do it for you, and, if you don’t do it, it won’t get done. A doctor will not magically guess the right treatment for you. It’s up to you to give him or her all of the relevant information.

In the last chapter we said that pain was not infallible. Well, guess what? Neither is your doctor. Unless you are reading this from an incredibly privileged position of wealth, the overwhelming likelihood is that your doctor is overworked, underpaid, stretched across too many patients, and working without enough sleep, support, or resources to properly help his or her patients. Appointment time varies by country, but the average is just over ten minutes—significantly less for more than half of the world’s population (eighteen countries have appointment times of less than five minutes), and a little more for wealthier nations (twenty minutes in the USA).3 Imagine that. Ten minutes—including prescreening by a nurse or medical assistant—to have an in-depth discussion with your doctor about your symptoms, possible causes, and treatment options and to think of and ask intelligent follow-up questions. That’s a tall order even for the most self-assured, articulate person.

So What Can I Do?

1. Be Prepared

This is the one best single, practical thing you can do to ensure your appointment is productive and your health care provider is put in the best position to help you. Before you attend your appointment, write down everything you need to say. List your symptoms (this is where the pain profile you worked on in the last chapter can help) clearly and simply. Include specifics such as the nature of the pain, duration, intensity, location, associated factors—even if you are not sure if they are relevant. If you are not a doctor, you may not know which factors are relevant and which aren’t, so let your doctor make that judgment call. List your medications and include any over-the-counter pain meds you take, how often and what dosage, how effective they are. List any therapies you have tried and their efficacy. If serious, include effects on your mood, routine, ability to work, sex drive, appetite, exercise, etc. You are the person experiencing the problem; the onus is on you to properly describe it.

2. Be Direct

Neither you nor your doctor has time to waste. Be clear and direct about why you have come in, what the problem is, and what you are hoping to achieve from the appointment. Have a goal in mind: a new medication, suggestions for alternative therapies, a referral to a specialist. This may or may not end up being the result, but if you do not have an intention for the appointment, you risk leaving without having made any progress.

3. Do Not Take Your Doctor’s Harried Nature or Brusque Attitude Personally

Do not interpret their attitude as a commentary on your medical situation. Your health care provider is a person, just like you, not a magical all-knowing being with endless capacity for patience and kindness. We might want them to be that, but they’re not. If they’re having a crappy day, they may well show it. Don’t personalize that. If it’s bad, if you feel they’re not listening to you, say so. You are allowed to do that! You have come in with a potentially tricky, difficult-to-diagnose-or-treat problem, and you should have their full attention.

4. Consider Asking for More Time

Pain is a complicated issue, and it is reasonable to expect a discussion of it to take longer than that of a cold or a sprained ankle. When making your appointment (especially with a general practitioner), consider asking for a longer appointment or an appointment at the end of the day—tell the receptionist you feel you need more time to speak with your doctor. They may not be able to help you, but most will appreciate your desire to avoid messing up their schedule by running long in the middle of the day.

5. Ask for a Referral

You may not be able to get the help you need from your family doctor or a specialist for a specific illness. Chronic pain specialists exist and focus purely on the understanding and treatment of physical pain. They have a wealth of knowledge your regular doctor does not and can be valuable resources. Consider asking your doctor for a referral, if this is an option near you.

6. Take Notes during Your Appointment

This may feel silly, but you probably have a lot of doctors’ appointments, regularly, and keeping track of it all can be an important diagnostic and treatment tool. Writing down your doctors’ suggestions, medication advice, and thoughts prevents you from forgetting anything, helps clear up confusion about instructions, and will strengthen the dialogue between you.

7. Take Suggestions Seriously

Your doctor may suggest a medication or treatment that you are uncomfortable with. You are well within your right to say so at the time—but do not discount everything. Doing so will discourage your doctor from trying to problem-solve with you and leave you even more on your own. Take their advice on board and, if possible, take notes on what you have tried and its efficacy.

Your relationship with your doctor is a partnership and should be treated as such. They are not gods who can wave their hands and solve every problem, and neither are you. You can and should demand time, attention, and respect from your doctor and for your pain, but do so realizing that they, like you, may be doing their best to fix an unfixable problem. It is your responsibility to be your own advocate for your health.

Misunderstanding Pain

Pain is a deeply misunderstood issue, and it can be very difficult to get a health care professional to take you seriously. All too often, we hear, “I told my doctor about the pain, but he said it was normal” or, “She said everyone gets that, I just have to suck it up and deal with it like everyone else.” Yes, everyone experiences pain at one time or another. And yes, it is all too common for doctors to try to explain pain away as a temporary symptom of something else, or even imaginary. The most heard (and most offensive) phrase for chronic pain sufferers is “It’s all in your head.” This dismissiveness and ignorance make a formal diagnosis incredibly difficult to come by. Those of you who have one probably had to see multiple doctors, maybe over a long period of time, before you were taken seriously.

Unfortunately, this is a problem that disproportionately affects women, who are perceived as having a lower pain tolerance and being more prone to complaint. This is simply false, and any doctor who tries to dismiss your legitimate pain for any reason, let alone gender, is wasting your time.

Not being taken seriously is the number one complaint those with pain disorders register when dealing with the medical profession. This is not necessarily anyone’s fault—an overworked, stressed doctor who has seen twenty people in a row with trifling complaints may be dismissive by habit rather than through callousness—but it does affect you, your health, and the management of your pain. Your pain is not secondary to your doctor’s mood (or timekeeping), and the single most effective way to ensure it is not treated as such is by not letting it be.

Sounds easy, right? Sure, I won’t let it. I’ll just snap my fingers and hey! presto, the doctor will take me seriously. And when the doctor I’ve been waiting three months to see dismisses my pain with a wave of his hand and declares I’m just “being dramatic,” I won’t take it personally and collapse into tears, thereby validating his assumption that I’m overly emotional or attention-seeking. I’ll be completely stoic, an emotionless robot who ignores her pain as callously as the doctor in front of me does.

Well, no. Expecting heroic displays of objectivity from ourselves, or high levels of compassion from every doctor, will lead to disappointment. But you can say, “I don’t think you’re taking me seriously.” Call them on it. See how they respond. Or, how about: “Here is a list of recent instances of pain, with extensive details of intensity, duration, et cetera. I would appreciate it if you tried to hear what I’m telling you, and I thought this list would help you understand.” Make it their problem—they were clearly unable to understand you the first time, so you’ve provided an idiot’s guide. Or how about simply: “This is not a problem I am willing to walk out of here without solving.”

These are difficult things to say. We are taught to respect our doctors, to listen to them, to defer to them. Being your own advocate is not easy and may not always make you friends. But what’s your alternative? Bow your head, nod, agree, and leave with the problem unsolved? It’s okay, I’ll just keep using this medication that does nothing. It’s alright, I can live with this pain by myself with no medical support. If you think that’s a realistic option, you may not be ready to call bullshit on your doctor. That’s okay—a lot of people aren’t. But don’t expect improvement, or for your pain to become manageable by itself, if so. Know the decision you are making.

In the vast majority of cases, calling them out is an extremely effective way of capturing your health care professional’s attention and ensuring they listen to you. They still may not be able to help—but at least you’re not screaming into the void. And for those doctors—and there are some—who are simply unwilling to believe you, walk away. Nothing can be achieved by seeing them again. How are you supposed to trust them with your health if they so clearly don’t trust you?

Misinformation

Misinformation about pain abounds, not just among medical professionals, but also online and in the media. So another important aspect of your self-advocacy is educating yourself. Even the best, most compassionate doctor can’t know everything. There may be options out there for you that they are unaware of; there may be practical solutions or advice that will help; you may even occasionally be told something that’s just flat-out not true. You need access to as much helpful and accurate data as possible, and you need to be able to spot the fiction. Be prepared to do your own research: visit forums, do internet searches, read books and health websites, and talk to other people with similar pain issues. There is a wealth of valuable information out there, and while it may not feel like it’s your job to find it, you are the person who’ll suffer if you don’t.

The Doctor’s Role

So we’ve said quite a few things already about doctors not listening, rushing, or not believing you. This is true in some cases, and may feel true in many more, but in order for you to really appreciate what you can expect from your doctor and know how to manage your relationship with your doctor, let’s look at their perspective for a second.

Until very recently, medical students were not trained in diagnosing, managing, or communicating chronic pain issues. It simply wasn’t in the curriculum. This has been rectified, and now all new doctors trained in North America have at least some tools to understand and explain chronic pain, but older doctors may not. They are the victims of changing standards, and probably perceive their responsibility toward you very differently than you do. Be aware of this, and allow this knowledge to prevent you from taking your doctor’s apparent attitude too personally.

It’s also important to know what a doctor is looking for and what a doctor is typically asked for, when a patient presents with chronic pain. Broadly speaking, there are three main issues:

1.First, the doctor must determine that the pain is not indicative of a new problem. Chronic pain sufferers can still get injuries and illnesses, and the doctor must satisfy himself or herself that nothing new or potentially threatening is happening before they address the known, chronic problem. Don’t get angry if your doctor seems to be re-treading old ground every time you visit—they’re not ignoring you or failing to listen; they’re safeguarding against something worse.

2.Imaging requests. Patients typically overestimate the usefulness of imaging techniques in diagnosing and treating chronic illnesses. An MRI or an ultrasound may sound like something that will give you answers and help you, but, in reality, they may be useless. Do not assume that a doctor who refuses to order certain tests is not taking you seriously. And, if you’re really concerned about a lack of tests, ask your doctor to put in your medical record the reasons they won’t order any. If they have a valid reason, then fine—if not, this can often spur them to action.

3.Medications are sometimes thought of as the answer to everything. We’ll discuss medication types and addiction issues later in the book—and clearly the over-prescription of strong painkillers is a difficult and complex issue—but again, refusal to prescribe certain meds is not necessarily a reflection on you or on your doctor’s belief in your pain. Doctors are facing pressure (and research supports that pressure) to lay off strong painkillers (especially opioids) and work with patients in pursuing alternative pain relief options. This trend will absolutely affect how your doctor interacts with you.

None of this is to say that there aren’t some doctors who dismiss chronic pain, belittle the need for extra help or meds, or ignore requests for disability paperwork support. Of course there are—most of us have met at least one of these doctors at some point—but not every harried, put-upon or poorly trained doctor is out to get you personally. For a more in-depth understanding of the divide in expectations and comprehension that influences communication issues between patients and doctors, I can do no better than recommending a book by Peter Ubel, MD: the excellent Critical Decisions. This book brilliantly covers what patients can expect—and what is expected of them—when working with a physician.

What You Will and Won’t Get

What to Expect from Your Doctor

•Time

•Attention

•Takes you seriously

•Asks questions

•Takes notes

•Recommends possible treatment options

•A referral if appropriate, with expected wait times

•Prescriptions

What You’ll Probably Get from Your Doctor

•A little time, but not enough

•Some questions, some of which you may not see the relevance of

•Confirmation of medications

•Suggestions of treatments and therapies

•Possible confusion (especially if they’re not trained in chronic pain)

•A statement that pain is tricky and they cannot be certain what is going on

What Your Doctor Can Expect from You

•Honesty

•Respectful attitude

•An honest, up-front assessment of what you can and cannot manage, given your lifestyle

•An open mind

•Awareness that they are working to a certain mandate and under certain restrictions

Things You Didn’t Know You Could Say to Your Doctor

•“I would like another doctor.”

•“I would like a referral.”

•“This prescription has bad side effects: I need another.”

•“You are not listening to me,” or “I feel as if you’re not listening to me.”

•“This is not a normal pain and I need you to recognize that.”

•“This is causing serious problems in my life, and I need you to help me.”

•“Your behavior is making me anxious, and I am unable to continue with this appointment.”

•“I need to come back another time.”

•“Please give me a moment; this is difficult to talk about.”

Know Your Rights

Each country and each medical system is different, so this is a tough topic—especially if you have transitioned from one system to another because of a relocation or financial change. But it is extremely important to know your rights as a patient, under the law, wherever you are. The law and medical governing bodies will set out a wide range of influencing factors in your health care, including: data protection, privacy, complaint procedures, extent of financial coverage, extent of financial liability, doctors’ required qualifications, medical practice insurance requirements, your medical insurance requirements, access to care (both primary and ongoing), and a million other things. Your ability to pay, ask for a referral or a new doctor, lodge a complaint, see your own records, or pursue alternative treatment avenues will all depend on your particular medical system. So research it. Know your rights—it will put you in a much stronger position when discussing your health care with your providers.