Earlier today, I experienced the scenario that those of us with chronic health conditions have nightmares about: my doctor didn’t believe me.
The doctor-patient relationship is one of the most vulnerable relationships you’ll ever have, especially if you have a chronic health condition that requires long-term care. So, when you bare your soul to your doctor, it can be incredibly painful when they don’t understand, validate or truly hear what you’re saying.
In the past year, I’ve seen 5+ doctors, including multiple specialists (both GI and OB/GYN), for my IBS. That doesn’t even include my mental health issues, which have warranted visits to the doctor, psychiatrist and multiple therapists. Still, it never fails to shock and hurt me when my doctor isn’t on my side.
Unfortunately, as someone with an emotional support animal (not to mention invisible health conditions), I know all too well what it feels like to be dismissed by your doctor. With so many people abusing the ESA designation these days, it’s become harder and harder to find a provider who is willing to advocate for you in this sphere of treatment.
If anything good came out of this journey, however, it’s that I learned how to advocate for myself in the medical system. I had to fight to get my ESA dog, Chandler — and it’s been one of the most meaningful and rewarding experiences of my life.
As Amy Kurtz writes in her book Kicking Sick, you are the only person responsible for your health — and you must become your own best advocate. Here’s how to do just that, based on my personal experiences with chronic illness.
Do your research.
As someone who’s done her time at the doctor’s office, it still surprises me how many docs don’t know the latest research.
I don’t say this to sound pretentious, but rather to point out that your doctor is human. Too many people make the assumption that their doctor knows more than they do — but just because you don’t have a medical degree doesn’t mean you can’t conduct your own research.
The key to successful medical research is knowing how to distinguish a credible source from a lousy one. Thankfully, I learned a lot about research as a Political Science minor, so I have plenty of tips and tricks to share! For starters….
- Not all websites are created equal. Sites like Healthline and Web MD are infamous for a reason. Sites like these will leave you thinking you’ve got fatal cancer after reading two paragraphs, when all you’ve got is a head cold. Instead, opt for sites that end in .edu, or ones affiliated with a major hospital. Mayo Clinic and Harvard Medical School both have great blogs that provide credible medical information. On the other hand, avoid Wiki sites like the plague: anyone can edit these sites, meaning not all the information on them can be trusted (no matter how authoritative they may seem).
- Learn to read scientific studies. If you’re not a doctor or don’t have an advanced degree, most journal articles simply aren’t written with you in mind — but that doesn’t mean you can’t garner useful information from them. Once you learn to look past all the medical jargon and decimal points, scientific studies can be one of your most valuable sources of information as a patient. Check out this step-by-step guide from Huffington Post for a detailed explanation for the non-scientifically minded.
- Check yourself before you wreck yourself. Before putting too much stock in the latest study, double-check two things: first, what was the sample size of the study? A sample size (represented by the variable ‘n’) tells you how many participants were involved in the study. Needless to say, a study of 10 patients yields less credible results than a study of 10,000 patients. Second, were the results statistically significant? This is the reason scientists include a column of ‘p-values’ in their reports. A minimum value of p<0.1 is required before a study’s results are considered statistically significant (which is basically a fancy way of saying that they’re legit), so keep an eye out for this value before you bet your life’s savings on the latest miracle cure.
Come armed with questions.
If you’ve ever been diagnosed with a chronic condition, you know how questions can crowd your head like a school of fish, leaving you laying awake at night tossing and turning. Yet when you visit the doctor’s office, your mind goes completely blank! How does this happen?
When you’re not prepared, you might forget to advocate for yourself, despite the best intentions. That’s why I always suggest writing down the most important questions as you think of them. I keep a little notebook in my purse to jot down questions for my doctor whenever they pop into my mind. Saving a note in your phone works, too!
Just remember the golden rule: there are no stupid questions, especially when it comes to your health. Chances are, your doctor has heard them all before, so you should never feel ashamed to ask. If you do, that might be your first sign that your doctor may not be the best fit for you and your needs as a patient!
Still stuck? Questions you might want to ask your doctor about your condition include:
- What is my diagnosis?
- What are my treatment options?
- Why do I need this treatment?
- How do I understand my test results?
- What are the side effects of my treatment?
- What lifestyle changes should I make to support recovery?
- Are there alternatives to my current treatment method?
- How many times have you done this procedure?
- Will this medication interact with my current treatment?
To build your own list of questions for your doctor, the Agency for Healthcare Research and Quality has a helpful Question Builder that will compile a list of questions for you to print and bring to your appointment. It even includes lines for notes beneath each question on the page so you can write down your doctor’s answers!
When I first suspected I had a gastrointestinal health condition, my mind immediately flew to the million-dollar question: IBS or IBD? There’s a huge difference between the two, since one impacts your colon cancer risk and one doesn’t (among other notable distinctions).
That’s why I pushed my doctors to rule out IBD as definitively as possible. The first time I went to the doctor’s for potential IBS, I pushed for a C-reactive protein blood test used to diagnose IBD. When I saw my first GI doc in Boston, I asked about getting my fecal calprotectin checked. And when my GI doctor in Cleveland suggested an optional colonoscopy, I went for it.
Long story short, my doctor was able to rule out IBD and diagnose me definitively with IBS — in no small part due to all the tests I’d pushed to have done. To some, these tests may seem excessive, but as someone with a family history of Crohn’s disease, it was especially important to me to rule out IBD as completely as possible before settling on a diagnosis of IBS.
More than once, I’ve worried about appearing “pushy” to doctors, or seeming like a “difficult” patient. But at the end of the day, what’s most important is your health — so, do your research and don’t be afraid to push for a test if you think you really need it.
At the very least, ask questions. If you’re curious about a test you read about online, bring it up casually at the doctor’s office and feel out their opinion on it. Should you find that your doctor is opposed to a test you think you really need, that might be a sign that your doctor isn’t the best fit for you and your chronic health condition after all.
Get a second opinion.
Doctors aren’t like partners. You aren’t “cheating” on your doctor if you decide to get a second opinion!
When you suffer from a chronic health condition, the doctor-patient relationship is important — but what’s most important is making sure you have the most comprehensive healthcare possible. If you find that your current doctor isn’t working for you, or says something about your condition that just doesn’t sit right, there’s no harm in getting a second opinion. Any doctor who is threatened by the idea of a second opinion probably shouldn’t be a doctor in the first place.
And look, I get it. Getting a second opinion can feel “dirty,” especially if you have a good relationship with your current doc. But think of it this way: the best case scenario is that you find the perfect doctor for you and switch to your new doc with zero regrets. The worst case scenario is they confirm exactly what your previous doctor said, and you have to choose whether to continue with either of them or get a third opinion instead.
The way I see it, this is an ideal worst case scenario — after all, no one gets hurt, and you won’t be jeopardizing your health either way! But if there’s anything I’ve learned in my journey through the healthcare system, it’s that you should always follow your instincts.
If you sense something is wrong with your health and your doctor won’t listen, you owe it to yourself to take your health into your own hands. In the doctor-patient relationship, YOU are the employer — so, hire and fire accordingly. You wouldn’t stay with a shitty boyfriend, so why stay with a shitty doctor?
Want to get a second opinion, but aren’t sure where to begin? Check out The American Cancer Society’s guide to getting a second opinion for helpful tips and conversation starters on when and how to get a second opinion.