I have lost count of the times I’ve been gaslit by a medical provider. I’m pretty confident that is due to the identities I hold as a Queer woman in a larger body who has had numerous mental health conditions, including recovering from substance use disorder. I’m also neurodivergent, a mental health provider myself, and have worked and lived with medical providers for many years. I’d say I’m pretty well-informed when it comes to stigma, medical trauma and gaslighting, and standards of care. And yet, I have to remind myself that I deserve good quality medical and behavioral healthcare every time I see a provider. I’d go as far as to say that learning self-advocacy is a crucial skill we must learn as part of our recovery.
Even when you’re working with excellent, compassionate medical providers who treat you respectfully, advocating for yourself can help you to feel more informed and engaged in your care.
My history of medical gaslighting
When I first realized I needed help with my alcohol use, I recall being in my late 20s and sitting in my doctor’s office. She commented on how I was drinking too much, and it was affecting my liver function. It was a wake-up call. But what I felt was a shame because instead of showing compassion and giving me treatment options, she just told me to cut it out. We all know substance use disorder is not a choice. If only it were—recovery would be significantly easier!
That story is one of many in which I have been mistreated, judged, stigmatized, discriminated against, and, ultimately, not adequately cared for. Over the years, medical providers have told me:
- My weight was the issue, even though it had nothing to do with my weight.
- I know more about a medical condition than they do.
- I cannot be trusted with controlled medications, even though I have the conditions to warrant them, because of my history. I’ve had to sign agreements that say if I become addicted to the substance, my provider will ditch me as a patient (including my family), rather than support me.
- They haven’t read my referral notes, but they don’t think I should be there.
- They can order the tests “if I want” rather than taking an interest in uncovering the source of my pain.
- There’s nothing wrong with my gallbladder despite nine months of pain. They failed to mention only completing one of several diagnostic procedures available to diagnose gallbladder disease.
- Insurance wouldn’t cover an iron infusion despite having chronically low iron and an undiagnosed hemoglobin disorder.
The gifts of recovery
Recovery, however, gave me the voice to stand up for myself. I learned how to advocate for my health because I didn’t get sober to be sick. I also learned to value myself enough to call out when a medical provider wasn’t meeting basic standards of care. I also became loud, publishing articles like Why Isn’t Women’s Pain Taken Seriously? TL;DR: Medical gaslighting, especially in people assigned female at birth, is a systemic issue with deep roots in patriarchy and the historical belief that “women” are hysterical.
Through my self-advocacy and research, I discovered I have a genetic disorder that had markers showing up in my blood results for as far back as I could get electronic records (12 years!). I’m finally on my way to finding out why I’ve experienced abdominal pain since March.
It has been a long journey, and I still experience gaslighting and feeling dismissed by providers regularly. The difference today, however, is that I ruminate about it less and stop turning inward and thinking the problem is me. There is no shame in asking a provider for help: that is precisely what recovery is about, knowing you can’t do this alone.
I know my concerns are valid today, and I am just as worthy of care.
How do you advocate for yourself?
You might wonder how you reach a place to advocate for yourself confidently. It doesn’t happen overnight, that’s for sure. It is challenging for many folks in recovery as our self-esteem took a hit during our substance use disorder (and often as part of a traumatic history). Whether you’re advocating for yourself with providers while in recovery or advocating for access to treatment, I want to affirm it is possible and validate your needs. My experience is that it takes time, practice, falling apart, and adapting. But above all, it means we start somewhere and in the knowledge that everyone deserves care, treatment, and resources.
Some of the things that have worked for me include:
- Get clear: Write a list of concerns with specifics where possible. Think: dates, behavior patterns, triggers, blood results, things you have tried, doctors you’ve visited, and other contributing factors. Some people keep a binder of all of this information and bring it to every medical appointment.
- Know what you are asking for: If seeking treatment, you might want to consider (and write down if that’s helpful) why you want help and why you think treatment is the best option for you.
- Advocate for your needs: Consider calling ahead and asking if you can send a list of your concerns to the provider before your appointment. I might say something like, “I’m neurodivergent, and I get overwhelmed and forget what I’d like to say or ask the doctor. Please can I send my notes so the provider or their assistant can look at them before the appointment?”
- Ask for a pause: If you’re in the session and feel overwhelmed, it is perfectly reasonable to express that feeling and ask for a moment to collect your thoughts.
- Question, question, question: Ask the provider for the rationale behind their assessment, diagnosis, and treatment plan. It can feel intimidating at first to speak up, but this is your health, and providers should strive to provide collaborative and transparent care. If you get home and want to ask a follow-up question, call or message the provider.
- Remember you are in charge of your care: So often, we entrust providers with knowing what is best for us. They don’t. Sure, they may have the medical or clinical expertise, but they don’t live in our bodies and have other competing demands. It is perfectly acceptable to take the reins in managing your care.
- Don’t be afraid to give feedback or call for a second opinion: I’ve learned that an individual doctor dismissing me does not mean there isn’t a need for care. I’ve asked for a second opinion several times. It helps remind them that you can also call your insurance company and provide feedback about your experience.
Not all doctors will be dismissive, and it is valuable to go into working with a new provider with an open mind. But your voice deserves to be heard in all of your medical treatment, and advocating for yourself is the way to make sure that happens.
