Finding Power as a Patient
A big part of what the MMHRC is about is patient expertise, gained through lived experience, and our collective ability to harness that deep insight and shape the research agenda.
It’s about empowerment through the sharing of our stories; taking ownership of those personal experiences and using them to heal and provide hope to others. We want to not only be part of improving healthcare for other mothers by being active participants in research, but we also want to claim our role as equal partners in co-creating solutions to some of the biggest hurdles we, as mothers, face when managing our mental health.
This all sounds great and speaks to some lofty ideas about the role patients can play in their healthcare. But as I was prepping a paper about patients and mental healthcare for an upcoming conference it hit me – being an empowered patient is a phenomena that really is only available to those of us with privilege. Whether that be because of socioeconomic status, gender identity, race or a variety of other factors – being an engaged and empowered patient isn’t something offered to all of us. In fact these opportunities are few and far between for most.
Being a patient can be terrifying
For many moms, being a patient and trying to navigate a complex and often confusing system of providers and services, insurance limitations and restrictions and medical jargon is hell on earth. Being a patient often means that you’re reduced to a number on a file or as part of some doctor’s case load. Being a patient means that you’re often assumed not to understand medical information. Or it’s thought that you don’t know what’s going on in your body and mind – even though you’re the one living in it – day in and day out. Being a patient means you’re labeled; maybe with a diagnostic code or as having an illness like postpartum depression. And once you’re labeled you carry that with you for the rest of your life.
If I’m really honest, self-identifying as a ‘patient’ and then talking openly about my battle with postpartum depression, panic disorder, post-traumatic stress disorder and a host of chronic health conditions scares me to death. I feel like the minute I’m a patient again I lose my power – a power that I’ve worked so hard to try and rebuild over the last four years. I feel like my autonomy and decision making ability are evaluated by whatever healthcare professional I’m in front of and I become my diagnosis.
Compound this with stigma that I can always feel nipping at my heels you might wonder why I keep pushing forward with getting the patient voice, the voice of moms from around the world, as part of the conversation with healthcare providers and researchers. Simply put – it’s because I can. I didn’t crawl through hell to not turn around and do my best to use that experience and try to make things a little easier for the other moms that will come after me.
Patient-centered healthcare is here, so lets go
We’re at this amazing juncture where the healthcare system is recognizing the need for patients to be part of their healthcare decisions and where there are opportunities I want to take advantage of them. I want to speak, write, present and advocate for the moms who can’t. Who aren’t given these opportunities whether it be from lack of access to the right mental health care, issues of intersectionality, the shame and stigma that keeps moms silent and alone, and for those moms that we lose to a maternal mental illness every year.
So I take a deep breath, try and remind myself that I have power regardless of my label or diagnosis, and push forward because I have to. I want to. And I want you all to join me on this journey in whatever way you can. Become a Patient Expert. Join us on Facebook. Follow us on Twitter. Share MMHRC with your friends, your family and your doctor. Blog for us. Connect with local researchers in your community and let them know we need them.
MMHRC is mom-powered. That’s how we started and that’s how we’ll keep moving forward. Collectively, together, as empowered patients, mothers and survivors.