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
