What Not To Say


Over the past few weeks, since my ALS diagnosis, I’ve gotten a huge amount of support and encouragement (which I’ve referred to often.) I am thankful for it, and draw great comfort from it.

But there are those, whether through a misplaced sense of authority, an overestimation of the depth of friendship, or just plain ignorance, who have asked and said some things that are range from insensitive and unsupportive to offensive and hurtful.

So here’s my list of What Not To Say to a Newly Diagnosed PALS.
(And this is my personal list, others with terminal illnesses may disagree.)

1. I understand.
Unless you have ALS, no you don’t. There is absolutely nothing that equates with a disease that will slowly and progressively make you a prisoner in your own body, robbing you of every motor skill including your ability to move, speak, eat, and finally, breathe, and all while your mind remains acutely aware of what’s going on. And it will do all of these things on its own timeline, unique to each individual: unpredictable, relentless, unstoppable.
You most certainly do not understand.

2. You got this! You go girl! Atta girl!  Keep positive!
Artificial cheeriness, save it. It only serves to diminish the struggle and be annoying. See also: Sanctimonious religious talk e.g. “God never gives us more than we can handle”.

3. You should/You must/You have to
No, I don’t, and please do not start a sentence with it. Anything I must, could, or should do/have done, I’ve got it covered. This includes trying such things as quack “cures,” trendy “treatments” and the all-purpose healer du jour (I think this week it’s coconut oil and turmeric).

4. My friend/hairdresser/cousin/whoever knows someone who had that and has been alive for years!
See numbers 1 & 2. Yes, there is an impossibly small percentage of people who live longer than the statistically backed 3-5 years post-diagnosis. You have a better chance of being hit by lightning, being eaten by a shark, or winning a lottery than being one of those people. This is not comforting. Related: When Mrs. Coleman/Mr. TIzzard/whoever had ALS, this is what happened to them. See #1.

5. There must be a cure/I don’t believe there’s nothing can be done.
You’re right. There is, but in keeping with current conspiracy theorists, Obama is keeping the cure in a bunker in upstate New York with Elvis, JFK, and bin Laden. Or maybe Stephen Harper took it with him to spite the Liberals. 

6. You’re going to need a wheelchair/feeding tube/BIPAP machine/insert medical equipment, treatment, or any future needs here.
I don’t care what your medical/health services background is. Unless you’re part of my own medical team, keep your thoughts to yourself. Do not rush me through this process. Do not presume to know that you can predict my progression, or my needs. I give them enough thought. Remember #1. My brain, such as it is, is intact.

There are plenty of things you can say, and most of you have said them all. For you, I am grateful. ❤



8 thoughts on “What Not To Say

Add yours

  1. I think everyone should memorize this list, and keep a copy handy as a refresher course. Somehow I have been fortunate enough not to hear any of these in regards to my husband’s noticeably worsening dementia, but I have heard one equally hurtful and hateful: it will all be over soon. Why anyone would think it a comfort to remind someone of their own, or a loved one’s mortality, is beyond me. Then there is: do you have any plans? Yes, I plan to punch you in the mouth. I loved that eCard, and I am going to print off a stack of those and hand them out to anyone who needs reminding. Why, as human beings, are we always able to say the wrong thing, when we know what the right thing is?

    Liked by 2 people

    1. Ugh-really? People have said that? I am so very sorry you’ve had to hear that, that is horrendous, and cruel beyond belief. And to ask about plans? As though you were gleefully plotting a life unencumbered? Ugh. (((<3 HUGS ❤ )))


  2. OH Liz – what I am dealing with is so much “less” than what you are dealing with and I have often had the same thoughts when I am told to try the latest greatest miracle – like turmeric or coconut oil. As a cook, you might enjoy a reply like..could I just roll you in turmeric and use the coconut oil to deep fry your sorry ass? I especially like “Oh, know how you feel as I have some arthritis in my (insert body part), see?”
    I did come to the realization that a lot of people just say things because they feel like they need to say something and they are at a loss about what would be suitable. So, it’s open mouth – insert foot. Sometimes, both feet.

    Liked by 3 people

    1. CW, as you know, my struggle does not diminish yours. I can only imagine your frustration when folks equate an aching joint with your RA. ❤ And, especially as you are so active, so stoic, and carry it gracefully, with dignity and humour intact. That's why I look to you for inspiration! People DO say wrong things with the right intentions, for sure. That's why I have not called out anyone who's said these things, and kept the list fairly general. And I try not to take it to heart, because I have no room or time left for negativity in there.


  3. Good for you Liz! I am so glad you named some things that are unhelpful.
    Whenever I find myself with one of those platitudes almost out of my mouth, I remind myself that silence is better than stupid words. And a simply, “I am so sorry, what can I do to support you in this?” is so much better that some things I have overheard.

    Liked by 1 person

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