Life
How to be Your Own Health Advocate
For most of my life, I thought of doctors as powerful, all-knowing beings, and of medicine as something that happened to me. This belief isn't unusual, but unfortunately, it leaves us unprepared for anything outside of the ordinary, from bad medical advice to issues that require us to make complex decisions. When these unexpected situations occur, we can make sometimes mistakes and end up with more serious problems than when we started. But it doesn’t have to be like this. If you can learn how to be your own health advocate, to be in charge of your own body and care, then you’re much more likely to heal well and quickly.
Learning how to advocate for your own health isn’t just a skill that’s important for people with chronic or life-threatening conditions; it’s helpful for everyone to partner with their doctors and learn how to participate in their own care, rather than think of themselves as passively receiving care. Accidents can happen to anyone, and the all-important work of preventative care should be a lifelong conversation between you and your doctor.
I know all of this from personal experience. I was 26 when I found out I had endometriosis — a misunderstood disease that’s very hard to treat — and it took me multiple misdiagnoses and demoralizing appointments with out-of-touch doctors to figure out that I had to be my own advocate, because no one else could do it for me. This experience is unfortunately all too common. When you’re feeling sick and scared and are facing a professional in a white coat, it’s much harder to feel empowered to disagree with your doctor, and much simpler to just do what he or she says without question — but that can lead to a lot of unnecessary pain, both mental and physical.
It’s one thing to know you need to be empowered, though, and another to actually feel empowered. Here are five simple steps I developed from my own experience — and from talking to some healthcare practitioners I work with as a massage therapist — that can help you gain that confidence, and learn how to advocate for yourself.
1. Do Your Own Research
The doctor who finally diagnosed me with endometriosis gave me an excellent piece of advice, and that's where this first step comes from: do your own research. I learned quickly that one of the most important ways to be your own advocate is to talk through your treatment options with your doctor, and the only way you can do this is by knowing something about your particular condition.
Doctors go through years of schooling to become experts — something most of us can’t, and shouldn’t try, to match. But even simple internet searches on reliable sites, like The Centers for Disease Control and Prevention or the Mayo Clinic, can yield a lot of valuable information for non-professionals, from the basics (what the condition is, how you get it, how it affects you) to the advanced (how to treat it, treatment side effects, experimental options.) If you’re not sure where else to look, the Consumer and Patient Health Information Section (CAPHIS) has an online list of the 100 best health websites.
Learning all of this information will help you know what to ask your doctor, and to understand what he or she recommends, no matter what health issue you're dealing with. However, for some conditions, it's even more important to do your own research, because not all doctors have the same body of knowledge about every condition. Some issues, like diabetes or heart disease, benefit from millions of research dollars and widespread public awareness campaigns, while others languish in obscurity, with outdated information and poor or ineffective treatment options. Sadly, diseases that solely or mostly affect women are far more likely to fall into this latter category, as are the specific ways that even well-funded conditions, like lung cancer, affect women instead of men. For example, as Bloomberg reported in 2014, "more women than men die of cardiovascular disease, while only one-third of cardiovascular clinical trial subjects are female and less than one-third of clinical trials that include women report outcomes by sex."
This is what I faced when I was trying to treat my endometriosis, because endo is one of those underfunded, misunderstood diseases. If I hadn’t done my own research, I would probably still be taking medications with side effects that drive me crazy, because that’s what the first doctor I saw recommended. The simple truth is that the disparity in funding for research means that some doctors may not have access to the latest research about your condition — or that they’re using out-of-date methods to treat you.
2. Ask A Lot of Questions
The National Institute of Health advises that you ask your doctor questions anytime you don't understand something. In my own experience, I found this was the best way to not only treat my condition, but also to build trust and communication with my doctor. This wasn't nearly as easy as it sounds — no one wants to be a pushy, demanding patient. In fact, most of us probably want to be polite and avoid taking up too much of our doctors’ time. But there’s a difference between wasting a doctor’s time, and using it to make informed decisions about your body. Knowing what to ask is closely related to doing research: once you’re armed with information, you know what to ask — which means that in the end, you’ll take up less of your doctor’s time than if you just asked a million uninformed questions.
So, if your doctor recommends a medication that you heard has alarming side effects, ask about them, and about other options. If your doctor recommends one treatment option but doesn’t mention another you read about, ask why. It might even be worth asking what will happen if you choose not to treat your condition, if only for the sake of your own knowledge, or to help motivate yourself through some of the side effects of treatment. And definitely always ask what is covered by insurance. Your doctor might not know everything, but can help with how to talk to your insurance company, and what to ask them, if need be.
Ask, too, about all of the small details that might seem unimportant now, but will seem much more essential when you’re home alone at night trying to remember what you should or shouldn’t eat, or what to do if you develop a rash or spike a fever. If you need surgery, for example, ask about surgery prep and recovery, and whether or not you’ll need physical therapy; if you need meds, ask about when and how to take them, and which side effects warrant a call to your doctor.
3. Stand Up For Yourself
This was one of the hardest steps that I had to take, but also one of the most important. At the core of everything, you’re the only one who knows what it’s like to live in your body. That means you’re the only one who can decide what you can or want to handle, and what you can’t or won’t. When doctors were pushing me to take some very high-strength meds, I read that one of the common side effects was weight gain. I’d just worked hard, over the course of an entire year, to lose a lot of weight. I knew I couldn’t handle seeing that weight come right back on, in a way I couldn’t control or manage. For these reasons, those particular meds were not a good option for me. I insisted on this with the doctors I saw, and when I found one who listened to my concerns, and agreed to try a different treatment option, I knew I’d found the right doctor for myself.
This all is much easier to say than do, of course. In order to ask questions, you have to feel entitled to ask, to take up your doctor’s time, and challenge his/her assumptions. To be, in essence, a partner in your own care instead of a subordinate.
4. Get a Second (or Third or Fourth) Opinion
If you’re dealing with treating a cut and dry illness or injury — like putting a cast on a simple fracture, or taking antibiotics for strep throat — this step probably isn’t necessary. But, as my own experience taught me, and as my fellow practitioners advised, there are many situations where a second opinion is not only warranted, but essential: when you’re facing a complex diagnosis; when you have an often misunderstood or poorly understood condition; when you have a life-threatening problem; when there are experimental treatments available but not widely used; or when you have an injury that isn’t easy or straightforward to heal.
In these situations, getting a second opinion can be life-saving. At the very least, it can spare you a lot of unnecessary pain. A good friend of mine has chronic ankle problems, and after years of ineffective treatments, he saw an orthopedic surgeon who recommended an ankle fusion — a procedure that would have taken away his pain but left him with zero mobility in his ankle. Worried and unsure of what to do, he sought out a second opinion. The second surgeon agreed that an ankle fusion might someday prove necessary, but voiced what my friend had been worrying about: that it was a fairly major procedure with lifelong implications. He suggested trying a simpler option first, to clear scar tissue out of the joint and see if that solved the problem. My friend agreed, and so far has been mobile and pain-free.
As the American Heart Association's website notes, there's nothing taboo about getting a second opinion — in fact, they note that asking your doctor for a recommendation for a second opinion can be a good starting place.
We are all empowered to switch providers if we need to.
5. Don’t Be Afraid to Make A Move
It’s one thing to respect your doctor; it’s another entirely to take his or her word as gospel truth. This may seem self-evident, but many people treat their doctors as if they are omniscient beings; they assume their doctors know everything and never challenge them. But if you’ve done your research, asked your questions, and advocated for yourself, and still find that your doctor isn’t listening to you, it might be time to move on.
Another friend of mine works as a chiropractor. Dr. Jacqueline Bouley tells every new patient she sees, “YOU get to hire and fire your healthcare professionals.” In other words, we are all empowered to switch providers if we need to. Instead of fighting through a relationship that isn’t working, consider going back to that second opinion you liked so much. Or, ask your other healthcare professionals for a referral; most providers build networks of other providers they know and respect, and will be happy to give you some names.
You can also always check in with friends and family, especially if someone you know is in the healthcare field, and ask for recommendations. And if all else fails, there are always advocacy groups, like the Endometriosis Association, the American Diabetes Association, or the American Cancer Society. Many diseases and conditions have associated research or advocacy groups like these that can provide information, assistance, and recommendations to members.
