I’m becoming an advocate by watching others advocate for me
Anticipating the times when I'll have to speak up for loved ones' needs
We spend much of life transitioning between roles. Nothing is supposed to last forever, and the time you spend in one role is already preparing you for the next.
Aware or not, I’ve been preparing to become an advocate, for myself and others, all of my life.
As an adult with cystic fibrosis (CF), I’ve benefited from many people — mostly my parents and wife — speaking up on my behalf, whether at a doctor appointment, the hospital, or even a restaurant. Some may see it as simply doing the right thing, but championing someone whose voice might not be heard can demand bravery.
I’ve viewed these people’s advocacy as a measuring stick to inform the person I want to be. It’s easy to write about wanting to be a better advocate and using my voice to diagnose an issue. The hard part is the actual act of making sure the person, or issue, receives the help that’s needed.
Being an advocate, even for myself, is difficult. I’m sure I speak for many others living with CF who, when left to our own devices, aren’t always heard by medical professionals. It’s deflating. But to get what I need, I must persist even when I want to give up or break down.
A lesson in empowerment from my wife
During my hospital stay in October, an echocardiogram found a small piece of debris in one of my heart valves. The next day, a Saturday, a doctor explained that I’d need a transesophageal echocardiogram — an echocardiogram that puts a device like a microphone down my throat — the upcoming Monday. For two days, I lay in bed anxious about what it could be. “The doctor told me it could be nothing,” I thought, “but it could be bacteria forming.”
On Monday morning, staff took me to another floor for the procedure I’d driven myself mad about. I was hooked up to an electrocardiogram and waited for roughly 30 minutes — only for a doctor to say they wouldn’t do the procedure after all because they’d learned that nearly 15 years ago, I’d had varicose (enlarged and twisted) veins in my esophagus. Because esophageal varicose veins sometimes form from blocked blood flow to the liver, they needed clearance from my liver doctor, notes from my last appointment with her, and last year’s endoscopy results.
They told me I had to wait for another day. I was livid and distraught. Of course, I understood that medical precautions needed to be taken, but nonetheless, my anxiety got the best of me.
Thankfully, my wife pushed me to vocalize my need to have the procedure done that day. I couldn’t deal with the stress for another day, and if it took phone calls among my liver doctor, the team doing the transesophageal echocardiogram, and my primary care team, then I was determined to get it done. My primary care team assured me that they’d do their best to make sure I had the proper paperwork so the procedure could be done that day.
Sure enough, after a few hours, the team took me back to have the procedure, which found that the debris was no longer there. It was probably a piece of food that was slowly (and I mean slowly) making its way down to my digestive system.
Putting the advocacy I’ve learned into action
I’m trying to bottle up that courage going forward as I’m looked upon to become an advocate for my loved ones.
Right now, the voiceless who need my voice more than any other are our two dogs. Otis and Ruby will get older and need someone to speak up for them with a veterinarian to ensure they get the help and medicine they’ll need.
As an only child, I’ll also have the responsibility to take care of my parents as they get older. (I know they’re going to cringe or laugh when they read to this point. Sorry, Mom and Dad!) It’s going to be my responsibility to ensure they make their medical appointments and that their doctors take care of them the way they’ve cared for me these 31 years.
As my wife and I are in the early stages of the in vitro fertilization process — necessary because my CF causes infertility — it’s my job to make sure she’s cared for and heard at every step, from genetic testing to delivery. Unfortunately, expecting mothers aren’t always heard by medical staff about their pain and discomfort. It’s on me to advocate for her the way she’s advocated for me.
It’s my turn to support those in my life who need it, and I’m ready to do so. After all, I’ve learned from watching the best.
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
Anthony Palmiero
Another great story. Love Tony
Helen Palmiero
What an insightful column you've written, Will! It opened my eyes to a lot. Although I don't have CF, I do have other very serious illnesses. CF is not your average, run-of-the mill illness and I'm therefore quite surprised you have had uphill battles with medical workers specializing in CF. I've just recently begun advocating for others and myself, little by little. It DOES take courage. Let's pray people will become easier to deal with and more understanding. Much Love, Helen
Tim Blowfield
Advocacy - very important - both for your own needs and others.
I have been advocating that Trikafta and the other Modulators be available to persons in Australia with mutations other than F508del and also that Doctors and others see that the CF affects on other systems are important rather than being dismissed as 'co-morbidities' - usually unimportant 'co-morbidities'. I often wonder if I am being heard. Usually feel as if ignored but I take heart in the story told by Jesus about the unjust judge.
The Parable of the Unjust Judge (also known as the Parable of the Importunate Widow or the Parable of the Persistent Woman, is one of the parables of Jesus which appears in the Gospel of Luke (Luke 18:1–8). In it, a judge who lacks compassion is repeatedly approached by a woman seeking justice. She persisted and was eventually granted justice not because it was the right thing but to stop her continuing to be a nuisance to the judge.
I take heart in the saying:
"I started work as a ..................., with no hope of becoming one!"