Breaking the News to Family and Friends, Talking to Children

Telling family and friends you have a diagnosis of ALS can be extremely difficult. At a time when you are trying to cope with the information yourself, you are faced with managing your loved ones’ reactions as well. You may want to pair the news of the diagnosis with specifics about what kind of responses to the information would be most helpful to you. Most people just want to be supportive when they hear your news, but may feel awkward or unsure of what kind of response would be best.

For instance, for some people with a new diagnosis of ALS, questions about their personal health feels intrusive, or too hard to talk about at this time. They’d prefer to talk about just about anything else. For this individual, when telling others, they might share the news and then say “I’ve found that what’s most helpful to me now is to stay upbeat, and focus on keeping up my normal life. I know you care—and I appreciate that. I’m just not ready to talk about it yet. I’d appreciate it if you would just keep to ‘business as usual’ and treat me like you always do.

To others, questions from others lets them know they care, and it may be the only way they’ll feel they have permission to open up and share what’s really going on. Let others know this! You may say something like “I’m really fine with you checking in on me, or asking whatever you wonder about. It lets me know you care.” Or: “I might not bring up how I feel about this on my own but that doesn’t mean I don’t want to. I might need your encouragement to help me talk about it!”

Consider what feels best for you- then give your friends the rules so they can play along: they’ll be grateful for it!

Special considerations: Telling Elderly Parents and Telling Your Children or Grandchildren



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