It’s easy to feel intimidated when entering the rare disease and Newborn Screening advocacy space. You hear eloquent speakers who always have quotable things to say, they seem to know everything, and all too often imposter syndrome sets in. You wonder why you should even get involved when there are more qualified people than you. Advocating for Newborn Screening can seem impossible.
I know I’ve certainly felt that way (and still do sometimes).
However, your story is just that: YOURS. No one has a story like you do, and by getting started now, when it is raw and real, you can have an impact that no one else can.
You don’t have to be an expert in anything except your lived experience– everything else can be learned along the way. And, you don’t have to bring policy solutions – just make them aware of the issue and ask them for help. Here’s a great resource about rare storytelling.
By telling your story authentically and boldly, and by making people uncomfortable along the way, you can have a great impact, even if you don’t feel ready.
The longer it is between diagnosis day and the start of your advocacy, the harder (and more traumatic) it can be to tap into the raw emotions you experienced. Our memories fade and it can be difficult to want to bring them up again. By starting to advocate for Newborn Screening now, while it’s fresh, it can be less traumatizing and can even be therapeutic to tell your story.
Advocating while your child is alive and can be with you is bold and powerful.
IF you decide to begin advocating while your child is still living, that can be a powerful thing. However, there is no pressure to do so. It’s okay to wait.
Decisionmakers aren’t able to ignore you and the severity of the situation when your child is present. Use this to your advantage and don’t be afraid to be bold (but respectful) in your message. If your child is unable to attend, bring a handout (or a booklet like I used in the photo below) with details and photos of your child to leave with the listener.
If you would rather tell your story through writing, go for it! As an example, here’s an article I wrote for Rare Revolution Magazine to reach a broader audience with my daughter’s story. Submit to online magazines (like Rare Revolution, or The Mighty), or start a blog. No matter the medium, be BOLD.
It isn’t easy to be vulnerable, especially with people you don’t know. However, even though it may be uncomfortable for you, it is impactful to be as real as possible when telling your story. While I don’t want to ask you to put yourself in uncomfortable situations unless you are willing, I am asking you to make the decision-makers uncomfortable whenever possible. If they feel empathy toward your situation and recognize that something needs to change, the discomfort is worth it all.
Growth doesn’t come from comfort, and change doesn’t, either. Your reality IS uncomfortable. and if you can make them feel that and act on that, you’ve won.
Your story isn’t finished yet, but that doesn’t mean you can’t get started if you are ready to do so. By showing decision-makers the reality of life with a rare disease, you and your child are living proof that early access to treatment matters. Yes, science matters and they need to hear those voices, too, but, lived experience from the parent/patient perspective is powerful. Advocating for Newborn Screening is important and will save lives!
Let us know in the comments: what makes you nervous about telling your story? In what areas would you like to see growth in yourself? Are you ready to begin advocating for Newborn Screening?