"Osteoporosis makes me mad!" :
The emotional toll of living with fragile bones
My mother is a kind person, but her emotional journey with Osteoporosis is deeply layered with fear, frustration, and vulnerability
An active grandma living with Osteoporosis
How does your research relate to the Challenge?
People living with Osteoporosis must navigate challenges in the health system and their personal lives, which can feel overwhelming and lead to frustration, ultimately preventing them from living this lives they wish to lead.
Tell us about your research:
I had the chance to interview my mother and her experiences of being diagnosed and living with Osteoporosis.
"Osteoporosis makes me feel mad!" is the first thing she said when I asked, what does living Osteoporosis feel like? It not like my mom to be mad about much, so we explored just what exactly made her feel that way. (note: the highlights below are not in rank order)
1. "I'm mad my bones are deteriorating and I can't control it". My mom has always prided herself in staying in shape, eating well, and not smoking. Her diagnosis was a signal that things were happening with her body that she had little to no control over. She was frustrated that she had done all the right things and still had a chronic disease.
2. "Its scary that I'm shrinking - I've lost 2 inches in the past few years". The scary part is not just physical change but what that means for her independence. She says, I can barely reach the high shelf now... what will happen in few years.
3. "Who would I call?" Mom contemplated what it would mean to have a fall and a fracture. She lives alone and doesn't know what she would do. This feeling of vulnerability is not only about the fracture, but also taking care of herself in the recovery period. She says "If I'm off my feet, how will I take care of my grand kids? Who will take care of me. I don't want to be a burden on anyone"
4. "Oh, you are just getting old!" When mom tells her physicians about her symptoms, she feels frustrated that this is the standard response. She feels like her doctors don't want to listen to her problems, investigate her symptoms, and collaborate to find solution.
What is an insight, question, or provocation that might inspire others during this challenge?
How might we better understand the rough points in the health system and remove frictions to help my mom and millions of women like her live the life them want to live?
Tell us about yourself
I am a health designer for UCB, the sponsor of this open innovation challenge.
(Optional) What might you need to understand to be successful in the Ideas Phase ahead?
More people living with Osteoporosis to share their story. More passionate innovators to listen and make a change in the world.