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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. ❤

 

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