Tagged: ALS, C*, genetic mutation, Living Well with ALS, mental health and ALS, SOD!, talking with pALS
- This topic has 4 replies, 4 voices, and was last updated 2 years, 2 months ago by Dagmar Munn.
March 9, 2021 at 8:02 am #17980AmandaKeymaster
- My aunt had the same thing and got better.”
- “You’re so brave.”
- “I know what it’s like…”
- “It’s going to be so hard to say goodbye.”
- “People die.”
- “They don’t look sick.”
- “Let me know if I can do anything.”
- Any statement that includes the word “should.”
What have people said to you that really bother’s you? Can you recall a time when you might have said something to someone with a debilitating or terminal illness that you wish you hadn’t said? What are some things that you wish people would say?
March 10, 2021 at 12:08 pm #17999LeeParticipant
I am a PALS, and have had versions of all of those things said to me. I try not to let it bother me too much, because I doubt if I have done any better at times myself. It is hard to know what to say to people facing death.
In some ways the thing that bothers me the most is when people say they have symptoms just like mine so they know what I am going through. I get that a lot. I can still use my arms and legs pretty well, and so I don’t “look like” I have ALS. A big issue for me is extreme fatigue, and if I mention that (which I try not to) many people say they are tired too, and that I just shouldn’t worry about it. I also have trouble chewing and swallowing, and using my hands, and many people say they have those problems sometimes too.
The worst thing said to me was by a woman who was a high school classmate years ago, and asked if I had considered the possibility that ALS was my brain’s way of telling me it wants to commit suicide.
March 12, 2021 at 7:38 am #18016AmandaKeymaster
Oh my gosh Lee, your classmates sounds ignorant! Not just about ALS, but about how the brain works.
I try to be careful and choose my words wisely when talking to a friend of family member that is ill. I think because of this forum I a very aware, or at least I try to be, when it comes to situations like this.
March 12, 2021 at 8:27 am #18017Kathy stitzParticipant
Sometimes it has bothered me when people say, “Well, really none of us knows how much time we have left to live.” I guess this is true but the difference is that when you are diagnosed with a terminal illness like ALS, it makes you start thinking about death because of the poor prognosis for this condition. Otherwise you are not thinking about death.
Sometimes people have said to me,”Let me know if I can do anything.” I think they have good intentions when saying this but, like it said in the article, people in this situation likely don’t know what they need. It’s more helpful for others to give specific examples of what they can do to help. Sometimes people also just don’t say anything because of not knowing what to say.
As to what I wish people would say, nobody can say anything that can take away this diagnosis and the life expectancy of only a few years. That is why these forums are so important. The people who participate understand what all of us are going through and we can all help and support each other in this difficult time.
March 16, 2021 at 3:57 pm #18079Dagmar MunnKeymaster
If you’re ready for a little humor on this topic… last year I wrote a short column “What (Not) to Say to a Friend Who Has ALS”
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