When the Pro Becomes the Patient: The Accidental Advocate
By Rebekah Rotstein
Rebekah Rotstein
I was only 28 when diagnosed with osteoporosis. I was a Pilates instructor at the time, and a teacher of teachers, training future instructors and leading a curriculum on special conditions including osteoporosis. So, my shock at the news was seismic.
I’d gotten a DXA merely to have a baseline for later in life, as osteoporosis runs in my family and both my parents had it. I never expected the results to reveal the bones of an octogenarian. My life changed overnight, and my world would never be the same.
I initially mourned the loss of ‘freedom’ to move my body as I wished. I knew from my work what motions and exercises I would now need to alter or even eliminate. And, as a former ballet dancer, I had a more intense relationship with my body than the average person might; so I was ANGRY. I resented my body for letting me down and not upholding its end of the bargain to support me and sustain me through life.
Mind you, I still had never fractured. But it was the sheer terrifying idea that I could fracture, which paralyzed me.
Once I recovered from my pity party – which I believe is a healthy stage of grief in these scenarios – I reached out to colleagues and read as much as I could. I sought out a respected endocrinologist who ran extensive testing on me and identified a deficit in vitamin D, which at the time was rarely spoken of in guidelines for the general public. Once we identified that there were no other red flags that might be the cause of my low bone mass and that medication would not be relevant for me, I began working with a personal trainer and changed my diet. I also added more weight-bearing exercises into my Pilates practice and began taking yoga classes too.
Over the next few years, I developed coursework for exercise professionals on osteoporosis. When a medical education company asked me to write an evidence-based paper on exercise for osteoporosis, I delved into the research, which opened my eyes to insights and info that I’d otherwise have been blind to. From this I created the Buff Bones® exercise method that has been the basis of my work for nearly 15 years now.
I’m not exaggerating when I say that osteoporosis changed my life! And, in many ways for the better.
Having worked with others affected by osteoporosis across many countries, I recognize the universal concern of those diagnosed with it, ranging from confusion to panic to denial. Which is why I believe that whatever emotions arise must be acknowledged and respected. This is far more than just a physical condition.
The experience has taught me empathy for other patients and in turn for my clients. I understand firsthand the fear and anxiety that a diagnosis can yield. I relate to the depression and hopelessness that many feel. And I understand the frustration and anger that many project onto their bodies, feeling that their bodies have failed them.
My experience also shed light on the nuances of the disease that generally are not publicly spoken of and offered great hope to myself and others. My physician explained that my tiny stature and small bones predisposed me to low bone mass, and that I would likely always be categorized as such. My examination of the research revealed how there is more to the osteoporosis picture than just bone density. My personal journey and professional practice also showed me how myself and others could indeed change their bone mass and muscle strength, and could reap the rewards of a full and active lifestyle.
My hope is for others to understand the lifestyle options available to them and that movement can be a vital part of their action plan to fight osteoporosis and fragility fractures. We don’t need to see our lives as limited – our options are vast and the more we’re reminded of this, the stronger we become!
This story is part of a support initiative called Voices of Osteoporosis: Stories of Hope and Inspiration. If you have experienced osteoporosis as a patient or caregiver, we invite you to share your story. Your story could inspire others to learn how to protect their ability to live their best life and stay bone strong. Click here to learn more.