Be Your Own Best Health Advocate
Because my parents are medical professionals, I grew up with an unquestionable respect and awe of doctors and nurses. For most of my life, I went to all my health appointments ready to accept what was told to me as gospel, asking very few (if any) questions.
My perception drastically changed when I lived in India for three years and experienced a spate of serious gastrointestinal problems throughout my time there. I visited doctors on a regular basis, swallowing up their advice and treatments, desperate for a solution. And it was during this time in my life that my hero-worship of health practitioners began to waver and eventually collapse.
It would take being diagnosed with trigeminal neuralgia (TN) two years ago to fully understood why.
Ugly and full of shame
For most of my life I have been fortunate to have competent, patient, compassionate doctors. Perhaps that’s one reason why I never had very many questions when in the examining room: any question I could’ve had in the moment was already answered. But I also know that I took for granted certain details that only become more salient as you get older. Details like insurance coverage and expected out-of-pocket commitments, long-term concerns, recovery periods and medication side effects. When we’re teenagers or in our 20s, or of “normal” health, we don’t deeply think about these things.
Then there’s the issue of doctors in whose care I wasn’t a fan of. My earliest remembered instinct on this point is the doctor I saw in my adolescence. I dreaded going to her and not because I was afraid of getting blood drawn or vaccines; I was embarrassed and terrified of what she was going to say about my weight and size. I was an average-sized girl with chubby phases due to all those pesky hormonal changes we’re subject to. But my doctor could be particularly brusque, and I always left my annual appointment feeling ugly and full of shame.
Remembering this makes me sad because that’s the first time in my life I didn’t feel comfortable or safe enough to ask questions. Since I was a child myself, I know that she should have been more kind and sensitive in her presentation. This is a perfect example of how we feel even as adults: that the doctor, dentist, nurse and any other health practitioner is the “adult” in the room whilst we are the ignorant child to be chastised.
None of us deserve that.
A tormenting contradiction
When I returned to New York after my three years in Mumbai, I had a newfound, uneasy suspicion of the medical community. I had a number of dental and oral procedures done in a few short years, and none of it was easy. I had prolonged courses of antibiotics and longer than expected recovery times. One doctor was kind to me, whilst another was callous and condescending.
I was beholden to a tormenting contradiction: I didn’t trust doctors to really hear or see me (even the good ones), but I also almost felt like a hostage of theirs, where I didn’t want the next question I ask to be perceived as stupid or disrespectful, thereby preventing them from giving me the best care possible. So I kept quiet. All of this left me feeling highly anxious — and exhausted.
It wasn’t all so bad though. During this time in my life, I was able to find doctors whom I trust. I found an internist with an amazing bedside manner, a neurologist who understands my medication tolerance and has helped with my migraines, and a gynecologist who brings health doses of humor to awkward situations. As I grew more comfortable in their hands, I learned to speak up.
Conjuring courage
Then, in 2017, I was diagnosed with TN, which changed everything about how I interact with health practitioners. One of the people I trust most in my life — my father — recognized my TN onset and, in quick succession, after numerous examinations, bloodwork and testing, my internist and neurologist agreed. I thank my lucky stars that I got my diagnosis without delay, and that it was with the help and support of excellent, competent, compassionate experts.
But if it wasn’t for the diagnosis of an incurable, rare, chronic condition about which so much is still unknown, I don’t know if I would have found the courage I needed to ask questions and not stop. The experience of not understanding exactly what's happening in my body has forced me to make a choice: I can keep quiet and let the weight of my anxiety grow heavier with time, or I can just give voice to my concerns and just ask. And if I’m treated with anything less than patience and respect, I can walk away and find someone else who will see and hear what I have to say.
And I have walked away from a few different practitioners. It wasn’t as hard to do as I initially thought. I’ve realized that if I don’t feel comfortable in a person’s hands, for whatever reason, I don’t need to force myself to continue. Already, chronic illness is uncomfortable and it’s my job to minimize that discomfort as much as I possibly can.
The right hands
Here’s what has helped me figure out if I’m in the right hands:
I defined that the “right hands” means a comforting bedside manner with a holistic view on health and treatment options. I know that I need to feel taken care of, as with a friend.
I write down all my questions, concerns or new information (e.g. a new study) before each appointment I attend. And I look for how thoughtfully and patiently the person I’m seeing addresses what I bring up (either in person or over email).
No one knows everything, so if my doctor doesn’t know the answer to my question or hasn’t read the same information I have, I look for her to say, “I don’t know, but let me look into that.”
If I’m scheduling an appointment with someone new, I screen them. I call first to find out if they have heard of TN and if they have any experience with it. If they haven’t, I know my choice is to either send them information before seeing them or to find someone else.
Because TN can be unpredictable, there’s always a chance that I may have to cancel my appointment at the last minute if I’m in a particularly brutal pain cycle. Even if a doctor I like has a strict cancellation policy, I know they’re a keeper if they are aware of my condition and make an exception for my situation.
I talk through any rough side effects from medications or treatments. If something isn’t agreeing with me, I know that any good practitioner will not want me to suffer and will adjust my treatment plan accordingly.
Neither a hero nor a villain
One of the biggest revelations I’ve had since my TN diagnosis is that any health practitioner I see — doctor, dentist, nurse, acupuncturist, therapist, whomever — is my expert-partner. We work together to help me. The biggest mistakes I’ve made in the past when it comes to my healthcare decisions is treating practitioners like heroes (or villains), but as with any relationship — personal or professional — it takes two. I have to advocate for myself in every examining room I step into and the best way to do that is to actively participate.
Practitioners are human and that means that they have their own preferences and personalities. Not all of them will mesh well with my preferences and personality, nor will they necessarily be able to give me what I need to feel safe and comfortable enough to speak up and work together to my benefit.
That means if conditions are such that I find advocating for myself too difficult, I need to move on.
This is about you
I want you to know that even in the best of health, no one likes going to the doctor. No one wants to go sit in a waiting room or an examination room. No one wants to put on one of those thin, scratchy gowns that are meant to give easy access for investigation. No one likes blood work, vaccines or other intravenous treatment. No one likes to hear about red flags or diagnoses. You’re not alone in finding this entire experience unpleasant.
But through all of it, no matter what your health status is, you need to be your own best health advocate. You need to ask those questions, raise those concerns, bring up things you’ve read. You need to feel safe, comfortable and looked after, so that you can rely on an expert’s expertise and take the best possible care of yourself.
Your health practitioner may be an expert in their field, but you’re the undisputed expert on yourself. Only you know what is going on in your body and mind. You have that information and need to share it if and when things come up.
There may be a lot of things outside of your control, but as much as possible, your future self will thank you for creating the conditions that make taking care of yourself easy now.
