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