Category: Families with ALS

How do you tell your friends and family you have ALS?

There is no easy way to tell family and friends you have been diagnosed with ALS. And there is no right or wrong way, either. Individual personalities, family circumstances, and the degree to which the symptoms are visible can all play a role in when, how, and with whom to share the news.

Lianne Johnston has worked with hundreds of families coping with ALS in the nine years she has been a Regional Manager for ALS Canada. She lists plenty of reasons people find it hard to talk about their diagnosis: feelings of denial, fear of upsetting family members such as elderly parents, a reluctance to receive pity from others, or lack of energy necessary to comfort others are just a few examples.

Fred Gillis: One family’s approach to sharing the news

For Fred Gillis, who was diagnosed with ALS in 2015, being open about the diagnosis and communicating the news quickly and extensively came very naturally. He and his wife, Lana, both peace officers in the RCMP, had experience delivering bad news in their professional lives that helped them to be proactive about informing the people around them. They describe themselves as “forthright and not the type of people to hide stuff,” so for them, putting off talking about Fred’s diagnosis was simply not an option although they are the first to admit this might not be everyone’s chosen path.

Fred’s willingness to talk about his ALS diagnosis doesn’t mean it wasn’t an emotional experience for him. Even today, he chokes up when he says that the hardest part was telling his three children, who were 16, 18, and 20 at the time. Within a week of receiving the news from their neurologist, Fred and Lana came up with a strategy for informing their children. They created a PowerPoint presentation to explain the disease and its progression, stress important information such as the fact that Fred’s ALS is not hereditary, and provide an opportunity to ask questions. Sharing with the children one at a time gave each of them a chance to react in their own way. For Fred and Lana, that was an important way to recognize their individual personalities.

When it came to telling their broader circle of family and friends, Fred and Lana created a communication strategy that recognized the power of all social media platforms. For Fred and Lana, it was very important that the news come directly from them as opposed to other sources. They chose to deliver the news in stages – all within a day or two – making use of personal email, internal work email and Facebook as their main modes of communication. Lana said that sharing information in this way was “extremely important” for Fred in accepting the disease and brought an “outpouring of love and support.” It also told people that Fred was open to talking about his disease and answering questions if anyone wanted to ask. And it meant that he and Lana didn’t have to tell the story over and over again.

Communicating can bring relief

As Fred explains, after sharing the news of his diagnosis, he felt “a tremendous sense of relief.” For him, it meant he could move on and spend his time in the best way possible. He understands that not everyone in his circle can journey alongside him. He doesn’t judge people. He relies on his sense of humour to deflect some of the sad feelings. As a 6’2” man who used to weigh 260 pounds, he jokes to his friends who he played hockey with: “Now you’ll finally be able to skate around me!”

When people are considering how to have some of the more difficult conversations about their ALS diagnosis, ALS Canada Regional Managers can provide guidance and insight as a result of their extensive experience working with families coping with ALS. Sarah McGuire, ALS Canada Regional Manager for Central Ontario & North Simcoe Muskoka, describes situations that can make delivering the news particularly difficult. “I have met people who recently lost close family members or friends for other reasons just prior to receiving their ALS diagnosis. Delivering this news on top of a loss can cause a lot of distress.” Similarly, in her work with parents who have young children, Sarah says, “I let people know that they are under no obligation to do anything immediately. However, it is important to know that our loved ones who know us very well – even young children – can eventually pick up on physical changes, stress levels, potential information being kept in confidence.” She says one of the benefits of being open about an ALS diagnosis is that you are fully in charge of the information that is shared.

You don’t have to do it alone

Melissa Van Tuyl, who supports people with ALS living in Hamilton, Niagara & Haldimand Brant, explains that she and her ALS Canada Regional Manager colleagues can attend family meetings to help answer some of the more difficult questions. “You don’t have to do it alone if you don’t want to,” she says, and recounts her experience with a woman who had worked in the school system for 25 years when she was diagnosed with ALS. The woman wanted to write a message to her colleagues so they wouldn’t assume she was simply taking early retirement. She and Melissa sat down together and wrote a personal message the woman could share with her colleagues in a way that was heartfelt and honest. ALS Canada can also provide families with resources such as “A manual for people living with ALS” or guides designed specially to help children and teens who have a family member living with ALS.

A neurologist’s perspective

Telling a patient that he or she has ALS is something that medical professionals take seriously so that the information is relayed in a way that is clear but also compassionate. In addition to being a neurologist and Medical Director of the ALS Clinic at the University of Saskatchewan, Dr. Kerri Schellenberg is the author of a paper called “Breaking bad news in amyotrophic lateral sclerosis: the need for medical education.” She stresses the importance of being sensitive to each of her patients’ individual needs in terms of how much information they want at any given time, and how to balance clear communication and empathy with respect to some of the common fears people express. She encourages her patients to ask as many questions as they want, and even to write down questions prior to meeting with her but as she admits, “it is a lot to take in at once.” She recommends a staged approach where she and her patient can revisit the same questions and introduce new information as time elapses.

In the same way, after someone has told family and friends about their diagnosis they can anticipate additional questions and the need to share new information as time passes. Using social media, creating a blog or sending group e-mails can be very helpful as a way to keep people informed. As Lana and Fred point out, “people just want to help.” Letting them know how can be difficult to articulate, but it can also open the door to just the kind of help, kindness, and support that is needed and appreciated.