I am the parent of a child with special needs.
There are many days when I’m exhausted, overwhelmed and frustrated. But there are also days when I feel empowered, excited and encouraged. On these days I want to share my patient story with others to help them overcome (or hopefully avoid) similar roadblocks and challenges.
It is my strong desire and passion for advocating for children with special needs that makes me go out and share my patient story whenever and wherever I can.
This passion also fuelled me to write a book - Your Child’s Voice - A Caregiver’s Guide to Advocating for Kids with Special Needs, Disabilities, or Others Who May Fall through the Cracks.
As I was advocating for my son, there were many times I was looking for a book to help me navigate this complex journey. Not finding a resource, I decided to write a book that could help others. In writing Your Child’s Voice, I interviewed healthcare professionals, educators and other parents to share their insights and advice, while also drawing from my own experience.
What I found is many of us ride the same roller coaster of emotions. We encounter many of the same struggles and challenges. And at the end of the day, all of us want the best care and support for our children.
Here’s the kicker. Most of us keep these emotions and experiences to ourselves. We think we are the only ones going through this journey. Or we are too worn out to share.
As a result, the feelings of isolation and frustration continue to snowball. By not sharing, we miss the valuable opportunity to be part of a larger community. To get the support of parents, caregivers and healthcare professionals who have been down the same road and have lessons to learn.
Sharing your patient story doesn’t need to be a huge undertaking. Rather, start with small steps. You can do this by determining
What are the key elements of your patient story? Narrowing it down to three key points you want people to know.
Who would benefit from hearing your patient story? Medical staff? Administration? Other patients? Broader community?
What learnings or call to action do you want to leave them with? Help people understand what you want them to do with the information you are sharing.
How can sharing your patient story benefit others? This is an important piece to think about as your story needs to be about more than your experience.
What is the best way to share your patient story? This can be writing a letter to a healthcare provider or organization, volunteering on a patient organization or blogging about your experience. You can scale how you share your patient story based on your personal comfort and available time.
As you gain more confidence and experience you can scale up how you share your story, if this is something that interests you.
I want other parents and caregivers to know they are not alone. I also want to help patients have the tools to share their patient story in an impactful way. And finally, I want to help healthcare professionals not only understand the importance of listening to patient stories, but also how to include them in meetings and communications materials.
Now that I’ve shared some tips in sharing your patient story, my question to you is what is your patient story? How are you sharing this story and with whom? If you’re not sharing your patient story, what is holding you back?
I’d love to hear your thoughts. Leave a comment below or send me a message.
Don’t keep your patient story to yourself. Find a way to share it to help others.