Deciding when and what to share after a diagnosis of ALS

Like many in the ALS community, I was saddened to learn of the recent death of Bryan Randall, a photographer and the partner of actor Sandra Bullock. I respected that his loved ones honored his request to keep his ALS diagnosis private throughout the course of his disease. I imagine it was challenging to do so, given that his partner was in the public eye.

Every individual and family affected by ALS has difficult decisions to make regarding what information to share, when to share it, and with whom.

For people living with ALS, there are no wrong answers. I admire those who have used their platform to raise awareness and share about a lesser-known and underfunded disease. At the same time, I have equal regard for those who keep their journey completely private. Living with ALS is challenging enough without feeling the pressure of sharing with others.

Deciding how and what to share was an early consideration for my late husband, Jeff, and me upon his ALS diagnosis in October 2018. Jeff was a reserved person, quiet and thoughtful, and for the most part, he was private.

It was through this lens that he considered whether and how to share news of his diagnosis, and when to do it. We discovered during those difficult early days, and over the 19 months that he lived with ALS, that sharing his journey was fluid and iterative, evolving as the disease progressed.

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How we communicated Jeff’s diagnosis

When he was diagnosed, Jeff’s first priority was sharing the news with his adult daughter and son, and then with the rest of his family. We’d kept them all apprised of his concerning symptoms and the battery of tests he was undergoing to determine their cause. When we heard the words “it is ALS,” I believe that among Jeff’s first thoughts was letting his kids know. The three of them were exceptionally close, and he wanted to reassure them, to let them know he was going to live each day as best he could.

The first few months that Jeff lived with ALS, we shared the news one-on-one with family and friends, and largely in person when we could. He and I were both still in shock and grieving, so sharing the news sometimes felt like reliving the diagnosis all over again. Our loved ones were understandably sad and shocked, and this was hard for us, too.

In January, three months after his diagnosis, Jeff decided he was ready to go more public with the news. He and I both used social media to connect with family, friends, and colleagues, so we decided that this would be an effective way to communicate going forward. We wrote a post together that shared the news and, more importantly, his feelings about it. In the post, Jeff noted his commitment to living each day, subtly setting the tone for what he wanted: acceptance, positivity, and no pity, with the last being most important for him.

Around the same time, we set up a private “Team Jeff” group on social media where we shared more personal and private updates, including news of his medical appointments and our victories and setbacks. We shared pictures of visits with friends, funny stories, and details of things he, or we, struggled with. Creating this group helped us manage the communication around his illness, demystify the disease, and let people know we were OK to talk about it. For us, the group provided support, humor, and a means to share honestly.

Jeff and I overtly lived by two tenets when it came to communication: one, that every message, even if I wrote it, was approved by him, and two, that we’d be honest — no sugarcoating, but no dramatizing, either. We wanted to be completely upfront once we did decide to share a piece of information.

I had a third, private tenet that I didn’t share with Jeff, which was that any details of his care and disease would uphold his ever-present dignity, which was core to who he was both before and during ALS. I would always ask before posting a picture and always seek his opinion when I felt like we needed to share some news.

The path of sharing was the right one for him and for us. What I’ve concluded, however, is that each person has the intrinsic right to reveal, or keep entirely private, their journey with ALS — and also to change their mind along the way. Whether in the public eye or a private citizen, no one has the responsibility or obligation to share.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.