How-To Move On after Being Gaslit by Your Doctor
(Part 3 of 3)
In my last post, I identified the 3 Steps for Moving On After Medical Gaslighting. But we haven’t yet established any of the How-Tos, and we definitely can’t gloss over these practicalities. They’re how we develop the skills of awareness and self-care.
To review, our 3 steps are:
STEP 1: FORGIVE YOURSELF
STEP 2: EXAMINE YOUR OPTIONS
STEP 3: TAKE Care
STEP 1: FORGIVE YOURSELF (HOW-TO)
You had NO CLUE it was going to happen.
You walked into that office expecting healthCARE and had ideas about what that meant. You vulnerably shared your signs, symptoms, and concerns, hoping to be heard and supported. Or maybe you arrived with armor from the get-go, already considering the medical staff untrustworthy due to medical racism, sexism, anti-fat bias, and many other cognitive biases. Those prejudices now encompass a growing number of people who suffer chronic illnesses that don’t respond to current tried-and-true diagnosis or treatment methods. And that’s more of us than you might expect!
STOP & READ: I recognize that this experience may not apply to everyone. You may have had the opportunity to walk out the doctor’s office door and move on to meet that amazing provider that swooped in and saved the day, your life, and found your answers. But I’m guessing that if you did, the celebrated practitioner didn’t do it alone. We never do. YOUR work and efforts were a huge part of the equation, so stick with me as we applaud your superpowers too. YOU are the hero here.
We cannot collectively address the solutions to a system that works for some conditions (and people) and not for others without taking a good hard look at reality and all its nuances. If you know me and my approach to addressing individualized health, you get how detailed and contextualized it can (and should) be. It’s all connected, right? It all matters.
Every social insult is a physiological injury.
That’s why it’s so important that you forgive yourself.
Forgive yourself for not knowing what you didn’t know before you learned it.
— Maya Angelou
It wasn’t your fault! Not in the least. It’s a systematic problem. And it’s deeply rooted.
So while we cannot change history or even the structures that lead us here, we can change ourselves. We can shift how these experiences impact our inner terrain. Our collective and self recognition is foundational. Forgiveness is key. Self-forgiveness is paramount.
Self-forgiveness is your ultimate act of resistance!
Studies show that forgiveness can improve sleep and reduce anxiety, depression and stress. Its power to alter health outcomes increases as we age. Not forgiving yourself can impact heart health, blood pressure and immune modulation.
Forgiveness is choosing to love. It is the first skill of self-giving love.
– Mahatma Gandhi
If you have a story of medical gaslighting to tell, go ahead and speak it. Aloud or to yourself. With a pen or crayon, a poem or a song. In the comments below or in the pages of your journal. And forgive yourself for what you didn’t know.
STEP 2: EXAMINE YOUR OPTIONS (HOW-TO x 2)
You’ve experienced the sting of being gaslit. You were told you were too sensitive. Too much. Overreacting. Reading too much into it. Dismissed for your perception of reality or even your own body.
And it would be easy for me to say, “just find another doctor.” It’s what I did with the two micro-stories I shared in previous posts (here and here). But finding a new doctor isn’t always an option. (You may have more choice than you think. I’ll share one of those stories below for inspiration.)
So if not another doctor, if we can’t actually walk out the door and never come back, what options do we have? Fortunately, there’s a powerful one. Are you ready? (Note: It may not be the answer you want to hear.)
Shift your expectations of the relationship.
“Find freedom in the context you inherit.”
– Lee Maracle (Stó:lō)
At Functional Nutrition Alliance, I teach practitioners about the difference between agreements and expectations. I love this conversation because agreements are something we create. That creation allows for co-agency. In contrast, expectations are something we usually “have” (and don’t actively choose). They can lead to disappointment, resentment, and polarity.
With agreements, we consider what’s actually possible in the given context. With expectations, we can get anxious, even defensive (by “we,” I mean both parties – the patient and the practitioner. And I’ve been both). Nobody likes living up to someone else’s expectations. Your doctor (or past doctor) is no exception!
An expectation is a belief you hold in your own head about an anticipated outcome. It’s usually singular. And we can feel betrayed when those expectations are breached (when in reality, we didn’t clearly voice our wants or needs). Expectations allow us to shift blame onto someone else. In this case, it may be the doctor who mishandled your care, leading you to feel unseen and belittled. And while that’s not OK, it’s interesting to consider how we shift the power without a power play.
Agreements may be the answer.
In contrast, an agreement is between two people (in this case, you and your doctor). It’s anything you each claim that you will or won’t do. Agreements must be clear – who is going to do what by when?
Anything else is careless. And not an (or in) agreement.
Toward this end, it’s important to remember that when you walk into your healthcare appointment, no agreements have yet been made. How to articulate what you want and come to an agreement is another story. As you ponder the difference between expectations and agreements, are there any interactions you can rewrite in your mind?
In considering the distinction, I’d be remiss if I didn’t point out where certain expectations are fundamental for healthy primary relationships. We all deserve to have certain expectations met so we can show up in those more challenging situations advocating for ourselves. These essential expectations help us keep a good measure of when something falls off the path of acceptance, and when we may need to articulate something more clearly that’s important to us (this is where agreements come into play).
While I’m far from a relationship counselor – except when it comes to the relationship we each have with our body, our symptoms, and our healthcare team – here are some Non-Negotiable expectations I believe we each deserve in our primary relationships. (Please feel free to add to the list and put those in the comments as we co-create!)
Note: The compassion, respect (and so on) that we expect from various types of relationships differ. We don’t expect the babysitter to assess our elbow rash, or the tax accountant to discuss our anxiety. We don’t think to ask the heart surgeon to look at our toenail fungus. Yet somehow, we’ve fallen into the idea that many of our other doctors – no matter their specialties, whether they be GPs or OB/GYNs or Endos or Gastros – know everything. This may include the tests we want them to run or the nutraceutical solution to a sign or symptom that replaces the standard pharmaceutical prescription. It’s important to consider and respect that they might not know what you know for a variety of reasons.
If you’ve ever worked for anybody else and had to “manage up” (i.e. manage your boss or supervisor to best navigate your on-the-job situation), think of it like that. Or if you’ve parented a teen and need to carefully avoid landmines while expressing your care, concern, and advice… yeah, that. The stakes may feel different (it’s your health and body, after all), but the approach is similar.
Head back here next week so that I can provide you with some swipe copy (ie. copy you can cut and paste to send to your own doctor) for how to communicate and create agreements.
And while you are examining your options, ponder where you may have had expectations that you can reframe as agreements the next time you see that provider. Meanwhile, consider if there is a way to find another provider and start with those agreements from the outset.
You may have more choice than you think!
Just because I have my standards they think I'm a bitch.
– Diana Ross
I’d like to share a personal story about finding an option I didn’t know existed when it came to choosing a doctor. It’s the kind of option that can make you feel like a burden, a bother, and any other B-word Diana Ross might pull out of her knee-high boot.
This story goes way back to the summer of 2000, after my husband Isamu was diagnosed with his brain tumor. Following his first marathon resection (16 hours of surgery to remove as much of the mass as possible for pathology and prognosis), he was assigned one of the neuro-oncologists at the UCSF brain tumor center who worked with his tumor type. She came to his hospital room to deliver the news about the pathological assessment. I’ll never forget her. Or that moment. (I just visited the center’s website to see if she still works there and got chills. She does.)
As we know in retrospect, the news was not good. Nor was her delivery. I don’t know that I could do any better, so I don’t blame her, but I wish she had left her pity at the door. Ultimately it was a personality mismatch between Isamu and the assigned Neuro-Oncologist.
When she told us that 5% of patients make it to the one year mark post diagnosis, Isamu was determined to be among that 5%. When she added that only 5% of those 5% live to 5 years, he made his intentions clear.
Her pragmatism was melancholic.
His pragmatism was tenacious.
This was over twenty years ago. We didn’t know what we now know about the role of genes and the potential of Precision Medicine for improving cancer outcomes. I certainly didn’t know what I now know about the terrain in which cancer can grow. This was all a jolt of a wake up.
One lesson we learned was that we could ask to change doctors at the brain tumor center. It took some encouragement because 1) we’d never been assigned a doctor before, especially not for something so grave; and 2) there were only three doctors to choose from for his particular care.
Reality check: we’d most certainly run into the doc we were dumping in the hallways!
Would that be awkward? What would she think of us for ditching her care?
The answer: Who cares!
In order to TAKE care, you sometimes have to find the care that works for you. And sometimes the littlest shift – in our case, from Dr. C to Dr. P, right in the same practice – can make a world of difference, where tenacity and candor meet their match.
Don’t be afraid of what anybody will think if it will ultimately serve you.
STEP 3: TAKE CARE (HOW-TO)
This third step in our 3 Steps for Moving On After Medical Gaslighting is what the pages of this blog are all about. This step allows us to nest in a place of optimal self-health while exploring our needs, wants, desires, and beliefs (!!) around health and healthcare.
TAKING care is a place we get to live, not just visit.
Many of us are really good at taking care of so many things: our partners, our kids, our parents, our communities, our work. And I’m not here to remind you to “secure your own mask before assisting others” (We hear that enough!).
Instead I want to encourage you to actually TAKE it.
This isn’t about prioritization. We’ve got to move beyond that. You are your #1 priority. Let’s assume that’s a given. This is about ownership and agency. And while freedom and possibility and resources of all sorts will look different for each and every one of us, I’m guessing there’s still a place for you to TAKE some of what you actually need.
If that looks like TAKING a bite of cake because you’re tired of the world telling you that you can’t, and that’s what you define as part of your healing… TAKE it!
Or if it looks like TAKING a food or beverage off the menu because it doesn’t make you feel good, despite the social, familial, or medical pressures you feel to fit in or “go with the flow”... TAKE it (out, in this case)!
Your TAKE care is going to be different from mine.
And it may be different today than it was last year, or that it will be in five. And while we’ll continue to explore this, remember that what you’re TAKING is seriously (and solely) for you. Your blood and bones. Your flesh and feelings. Your genes and glands. All of you.
If you think it’s self-health to do something in reaction to (for, or against) some pressure or force outside of you, remember that in doing so, you are not actually TAKING care (of you). Sometimes TAKING care looks like saying “yes.” And sometimes it means “no.” But it’s always a radical act of self-transformation.