Learning to advocate for ourselves in healthcare settings
Speaking up about my needs has actually saved my life
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There’s nothing I love more than alliteration. It might be a bit dramatic, but I think Advocacy August, one of my favorite months, warrants the drama. I’m passionate about advocacy, both from personal experience and as a therapist.
Living with cystic fibrosis (CF) and navigating the healthcare system all my life has helped me develop my advocacy skills. Through trial and error, I’ve learned what works best for me and recognized how my experiences differ from more classic cases of CF. Speaking up about my needs has been vital for staying as healthy as possible.
I’ll share some key elements that have helped me cultivate the ability to self-advocate in healthcare settings.
Steering the ship of my health
Speaking up for myself can get a bit sticky sometimes, especially when I don’t agree with the care plan. Having lived in my body for decades, I’m intimately familiar with its idiosyncrasies and know whether certain interventions are effective or cause me more harm than good. My personal experience often contradicts textbook CF cases or research, creating friction in doctors’ offices.
Having challenging conversations with medical providers isn’t ideal, but it’s bound to happen when different providers approach care differently. What stands out most are those who collaborate with me. These relationships are priceless, contributing to my longevity and reassuring me that my specific needs will be met.
Authenticity and vulnerability are key to collaborative working relationships. This goes for both parties. I want to steer the ship of my health rather than simply do what I’m told without asking questions. Being involved in the decision-making process has saved my life numerous times.
Another type of advocacy is being the squeaky wheel. I’ve realized that I’m not asking too much, and I’m not being annoying (not on purpose, anyway). Nobody cares more about my life than I do. It’s important to take the reins of my health rather than waiting for healthcare professionals to keep track of everything for me. This is essential to my overall well-being.
Being the expert on my body, medications, and health is crucial. Medical professionals work with numerous patients; they don’t have the capacity to remember every tiny detail of my health. It is my job to keep track, remain educated, and stay up to date on my specific needs.
There are times when I’m too sick to advocate for myself. When I was in respiratory failure prior to my double-lung transplant eight years ago, I didn’t have the energy, breath, or bandwidth to fight for what I needed. I had (and still have) trusted individuals whom I’ve educated about my needs so that when I can’t self-advocate, I have loved ones in my corner who can speak up for me. These people are lifelines — use them!
Lastly, what helps me persist in advocating for myself is remembering that there are people who don’t self-advocate, or don’t know how to. I hope I can help pave the way for others to get their needs met, too. As I’ve learned personally and professionally, advocacy saves lives.
What questions do you have about advocacy? Ask in the comments below!
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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