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Knowing When to Share Your Story as a Parent Advocate

I spend a lot of time talking about patient advocacy, as a writer, speaker and most importantly, as a mother. I help people find their voice, understand and clarify their patient story, and work with healthcare professionals to incorporate patient voices in a meaningful way.

In all of my work, one comment comes up again and again: When (or) is it OK to sit it out and not share my story?

It is important each and every time you share your patient story or consider advocating for yourself or others that you first do a self check-in to see if you are in a safe place to advocate.

What do I mean by that? Let’s look at the situation of a parent of a child with a disability or medical needs. Parenting is an exhausting, full-time job with no days off. And parenting a child with disabilities or medical needs comes with its own set of challenges. Sometimes these particularly challenging times coincide with the need or opportunity to advocate. But guess what? That parent is exhausted  —  mentally, physically and emotionally.

In this situation, it’s important the parent focuses their attention on supporting their child and themselves. In some cases, it means sitting back and not taking every opportunity to share their story. In other cases it means getting a friend or family member to advocate on their behalf.

One reason why it’s important to do a self check-in, is the fact that in some occasions, advocating or sharing your story can cause more harm than good. Think about it. If you’re running at a low energy level, are you thinking clearly? Are you able to process information, make rational decisions, and separate the emotions and the facts? Probably not.

If you’re like me, during these times, you want nothing more than to curl up under a blanket on the couch watching Netflix. Yes, that might not be possible, but you get the idea.

Since none of us live in a bubble, the outside factors that impact us are always changing.

Self Reflection

I was recently helping a group of patients work through their patient stories. One of the attendees shared an experience of telling his patient story one month, with no problems, then resharing the next month and falling apart. He had difficulty understanding why he could share it so clearly one time, but be profoundly emotionally impacted the next time. Yet it was the same story.

I asked if he had done a self check-in before each request to share his story. He had not (nor did he ever think that he needed to). We then talked about the external and internal factors surrounding him when he told each story. Guess what? The circumstances around him were different (no surprise).

As we talked through what was going on in his life at the two different times, he began to realize how seemingly small factors (getting over a bad cold, have a rough week at work, not sleeping well) had made such a huge impact on not only his ability to share, but also made him feel emotionally drained after the experience.

It was a great aha moment for him, and others in the room, on taking the time to do a self check-in each and every time you are thinking about advocating or sharing your patient story.

I know I have had to let advocacy moments pass because my child needs my full attention. In some cases, I put on my patient advocacy hat and revisited the situation when my child was in a more stable situation. In other cases, I let the moment pass completely.

Please remember to give yourself permission to sit it out every now and then. Take care of yourself and/or your loved one. And if it’s a life-threatening or high need situation, ask someone to advocate on your behalf. By recognizing when you need to sit it out, you will be a stronger, and more respected, patient voice.

Getty image by Feodora Chiosea