Showing My Stripes
I had a follow up this week with my physician who did my procedure this December. As we spoke about the procedure and recovery he repeatedly said - “yeah but your pain went away when you went home from the hospital.” I corrected him each time- explaining the agonizing pain for hours each day in the week following. But he never heard me. He said, "yeah but it wasn’t that bad.” As he spoke my mind raced to the hours I paced my hallways in pain, the nausea that would overcome me and the uncontrollable shaking in my body when the pain was too much to bear.
He didn’t hear me. And by not hearing me my pain did not exist. Except it did.
Rare diseases patients fight to be heard. It is in many instances our greatest fight. And I mean really heard, not just the noise of our voice but for someone to really listen to our words. And to believe us. And to respond thoughtfully.
In medical school students are taught, "when you hear the sound of hoof beats, think horses, not zebras." "Zebra" is used in reference to a rare disease or condition and it is assumed most often that patients have common conditions and experiences.
My doctor this week stated, “ but that pain level only lasts for a few hours in my patients.” And I continued to repeat my experience that my pain was not a few hours but days hoping he would understand that there is not an “only way” - that each patient experience is unique and requires treatment accordingly.
International Rare Disease Day is approaching on February 28th and it is an opportunity to bring attention to the more than 300 million people worldwide who live with rare diseases- zebras who each have our own unique stripes but in most instances no cures. And it is an important opportunity for us to share our story- to be heard. In doing so, this day not only improves knowledge about rare diseases to the general public but it also encourages researchers and decision makers to find new ways to improve the health and quality of life for those dealing with rare diseases, as well as for their families. And I hope importantly reminds the physician community to not just think horses.
I became actively involved in the rare disease community about a year after my mother died. It felt like a natural next step in my grieving process- trying to be a part of helping to ensure another family didn’t lose someone because we do not know. At the time I could not have predicted how life-changing and healing this experience would be-to get to better know a community of people living my shared reality, each with their own story and lessons to share. And unexpectedly it has allowed me an opportunity to also share my patient experiences with physicians who fight along with us and who rely on our voices to drive their patient care and research forward.
The work of the rare disease community is what gives me hope for my future, for my son’s future. It is what challenges me to be vulnerable and to never stop sharing my story-showing my stripes and making my invisible diseases visible.
I know for sure that rare or not we all want our truths to be heard and that our stories do matter And perhaps even more, we also have a responsibility to listen and learn from each other.
My hope for Rare Disease Day this year is that it is a day when the many who speak will feel heard, a day when the world will listen, a day we acknowledge the many caregivers and physicians who never stop fighting with us and a day where we come together to recognize and celebrate the rare - the zebras among us-and the unique stripes we wear.
Editor’s Note: To learn more about how to participate in the International Rare Disease Day on February 28, 2021 please click here.
