What Does Advocacy Mean to You? (Part 2)
In Part 1, we heard from some of our advocates about what kinds of advocacy they do and what advocacy means to them. Well, get ready for some more great advocacy talk! Even more of our advocates had some thoughts, ideas, and experiences to share. Read on to see what they had to say.
What advocacy means to me
Response from Meagan Brackeen
For me, advocacy means learning as much as possible about the subject and how it specifically affects me or my family. Learning and gaining knowledge puts me in the best position to ask questions and have a meaningful conversation in order to achieve a goal or outcome.
I’ve had to advocate for my daughter in different situations: with her clinic on the best way to approach a treatment plan, at school so they can administer her medicine and keep an eye out for CF-related symptoms, and among family and friends, requesting notification of a cough or cold so we can decide whether to attend an event.
Speaking up for my daughter
Response from Holly Williams
Advocacy to me means asking questions. It means learning how to say “No” to certain protocols or procedures. Advocacy to me means speaking up for my daughter in her day-to-day life, with teachers or at the pediatrician's office and asking for what she needs to stay healthy, and not accepting no when I feel a "Yes" is possible. Advocacy is talking about CF whenever my heart is strong and I can share what this disease is like for Caroline with others.
If it helps just one person, it’s worth it
Response from Kate Eveling
To me, advocacy means that I stand up for who I am unapologetically and share my experiences with CF. Before I was vocal about having CF, I would try to pretend I didn’t have it. But being able to stand up with acceptance and say “I have CF, it sucks but I am trying my best” has made the biggest difference in my life. And if someone else is struggling with the same issue that I was, then advocacy shows people that it’s okay to speak up about a chronic condition. It’s okay to say you have cystic fibrosis. There is nothing to be ashamed of, so if advocating helps just one other person, then that makes it worthwhile to me.
Plus advocacy brings together a whole community of people who are fighting through the same condition.
The added bonus, of course, is raising awareness to people who never knew it existed. I never believed I could make an impact on anyone by opening up with CF. But the truth is there are people in my life that are now aware of it, because I opened up and because I continue to advocate for it. That in itself makes it all worth it.
Standing up for myself and my care
Response from Nicole Driscoll
When I hear the term advocacy, I immediately think of patient advocacy. I think of the importance of speaking up and taking responsibility for my own healthcare. When I was younger I mostly relied on my parents to tell me what to do based on my doctor’s recommendations and direction. I didn’t really give it too much thought.
As I got a bit older and started to see my doctor by myself while my mom waited (and often fell asleep!) in the waiting room, I realized I needed to understand more. I needed to know the why behind the prescription medications, the therapies, and the treatment plan. It wasn’t enough for me to just listen and accept; I had to understand the why because that is what really motivated me to stay compliant and on track, while also challenging the plan appropriately as well.
Taking charge of my healthcare seemed to come naturally to me – mostly because I feel I always have to be in control of everything (to a fault) because deep down I know I have little control over CF, the progression, and my future. I guess you could say it’s the way I cope.
While there are times I may be uncomfortable speaking up and challenging things in the everyday course of life, when it comes to my health I do not hesitate. I know that if I don’t speak up, don’t challenge, and don’t ask the questions – who else will? While I am fully capable of doing it myself, I must take ownership. My CF care team are not the only ones I see to manage my health; others might not know my history and my experiences, which makes it that much more important for me to speak up for myself and take charge of my healthcare.
As I have gotten older my adult CF care team welcomes and encourages my thoughts and opinions of my treatment plan. They want me to be bought in and committed because that is the best way that we will accomplish the goals together of managing CF to the best of our abilities. We make decisions together and it holds me accountable.
I cannot stress the importance of being an advocate for yourself as a patient. This is something I practice every day and even coach my close family on this as well (not CF-related) – it is important to know that you don’t have to sit back and stay quiet; you have a right to make decisions about your healthcare!
Would you consider yourself a CF advocate?
Have you (or a loved one) been experiencing any negative side effects from Trikafta?