Who Is the Gatekeeper of the Information Shared About My Child's Health Condition?

I have always found it challenging to know exactly what information about my son’s chronic health issues is appropriate to share with others.

Although his story, his battle with Crohn’s disease, obviously impacted my story, it has always predominantly been his story. He was the one facing the health challenges.

In the battle of chronic health, he was the main character, and I was a supporting character.

So while there were details I could have, or may have wanted to share with others about his health struggles — his surgeries and treatments, or how his illness impacted his life — these specifics were not mine to share. At least not until I had first obtained his permission.

I grew to understand the gatekeeper regarding the amount and the timing of information to be shared, must be the person dealing with the chronic health issues.

It is important for someone who has lost control over their own body and how their story is unfolding to maintain and exert control wherever and whenever and however possible. And this includes what and how and when details about their health are to be revealed. Ensuring they remain the gatekeeper, not only helps them to maintain a measure of control, but it helps them to maintain their resiliency and emotional wellbeing.

Overtime, and through trial and error, we learned to navigate this with our son by always consulting with him about what he felt was acceptable to share. So before we post pictures of him on Facebook, write something about his illness, or share his story, we always check with him first.

I am confident our son would tell you this has given him a sense of control over the dissemination of information he felt different individuals or groups or the internet community were entitled to know.

For a long time, as he learned to cope with the illness and faced the darkest days of his battle, he chose to share minimal details about what he was facing, his fears and worries, what his typical day was like, how the illness was controlling and limiting him or exactly what type of surgeries he had undergone.

But in time, after he had the time to process his experiences and was having better days, he was more prepared to share his story. And in his own way, in his own timing, he chose to vulnerably and transparently share his story through a friend’s school project, in a video testimony, which eventually was shared publicly when it was posted on Facebook.

Once he had shared his video testimony, it opened space for us to share more as well.

But overtime, even though he has become more open and comfortable about sharing his story, I still check with him whenever I would like to write an article or speak about our experiences around his chronic health. I seek his permission first, letting him know what I am intending, so that he is never caught off guard by being unexpectedly confronted by something that pertains to his personal journey with chronic health.

Our goal, as Michael’s parents, has been to empower him wherever possible. To do whatever we can to help maintain his privacy and to ensure that he remains the gatekeeper around information and sharing.

Through this journey of chronic health issues, we have been so proud of his courage and authenticity, and of how he has worked through and processed his illness. And as he has become more transparent, we too can become more open about sharing his story, all with the sincere prayer that it inspires and helps others who are battling with their own chronic health challenges.

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