When health crises occur, it’s crucial I advocate for myself
I need to trust my intuition when something feels off in my body
After my double-lung transplant six years ago, I struggled to exercise. I was breathless and had symptoms of hypoxia, or low oxygen, which didn’t make sense given that I’d just had my cystic fibrosis lungs removed. Tests showed that my new lungs were healthy, so why couldn’t I breathe? Finding the answer wasn’t easy, but I did learn that persistent advocacy is essential when health crises arise.
Before my transplant, I was extremely active. I loved pushing my limits and didn’t allow my failing lungs to stop me. Leading up to my transplant, I was running around the hospital grounds while dragging an oxygen tank dispensing me 6 liters per minute. It not only helped my mental health, but it was also great airway clearance.
After my transplant, I was baffled to be breathless when I attempted to exercise. I couldn’t run more than a block without having to catch my breath, which traumatically reminded me of my life before my transplant. I knew something was wrong with my body, but I didn’t understand what it could be.
I went to several doctors asking for help in tracking down the issue. I got responses like “You’re going too hard, too fast. You need to start slow.” Or “It’s probably in your head. You need to understand that you have new lungs.” Another common one was “Your numbers are fine; nothing is wrong with you. Go live your life.”
Several people in my life also thought I was crazy. Going to the emergency department and visiting multiple specialists, only to come up empty every time, reinforced their narrative that the issue had to be in my head. It was incredibly isolating and disheartening when only a few people stuck by me and believed that I knew my body best.
Trusting my intuition
During this process, I had to switch medical teams several times. When they caused harm and failed to listen to me, I no longer trusted them with my life. Even though I’d seen a lot of them for several years, I had to listen to my inner wisdom that knew something was wrong with me. And I needed medical professionals who listened to me and took my health seriously.
After sifting through several doctors, four years ago I found a team that believes I know my body best. My doctor took the time to order a variety of tests and rule things out, and after four years, we’ve finally found the actual cause of my breathlessness. It was a grueling process, but I’m so grateful that I was taken seriously.
Turns out my vocal cords are to blame for my symptoms. I’ll share those details in another column, but for now, I’ll just say that finally finding the root of the problem and having empathetic validation from my doctor made me weep with relief.
It reminded me how important it is to advocate for myself. Through 37 years of chronic illness, I’ve learned that nobody cares more about my life than I do. If I have specific needs and requirements that work for my unique body, then it’s my responsibility to find medical professionals who will listen to me and honor my expertise. I gained confidence that I do know my body best, and listening to my intuition was the best life choice I ever made.
There have been several other instances when advocating for myself saved me from near-death experiences. I hope this encourages those who are in similar situations to use their voice to get the care they need and deserve.
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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Comments
Kay
Hi Lara - Your experience is one that I'm living through now. I think a lot of people with CF do as well. It's not always rainbows and unicorns with the CF clinic / doctors. Often they just don't listen. The gas-lighting I have received is prompting me to write a book about my experience. You couldn't make up the level of unprofessionalism that I have endured. The sad thing is that I blame myself for trusting multiple doctors with my LIFE and they have left me with permanent lung damage leaving me a sitting duck for another NTM etc.
I kind of always knew that a doctor would end up killing me. I was so right....
LeeAnn J Suit
This was an inspiring story. Thank you for sharing. I am looking for a someone I could reach out to for some CF support once in a while could I send you a Facebook request. Respectfully Submitted, LeeAnn Suit