When I was a lot younger, I tended to think that pity was a nice thing; it meant the person cared, right? I couldn’t really understand why someone wouldn’t want it. I wondered at the vision of a weathered figure, perhaps a cripple (yeah I’m old school), either in a movie or on a street somewhere retorting “I don’t want your pity!” in digust.
Now that I’m like, a proper adult (!?), and in a situation that could arguably draw a fair amount of pity, I have learned that there is a difference between pity, and empathy and compassion.”You poor thing, and so young!” is quite different from “That must be hard for you, do you have the support you need?”.
And fairness really has little to do with it. Most people at some stage in their life will realise that life is not fair, from our limited perspective. How much more fair is my situation, compared to someone in a third world country, who has 3 mouths to feed, no government support and barely a shack to live in?
There’s a certain kind of.. je ne sais quoi.. an “ew”? that develops toward people that happen upon you and your story and just think, or even say “aw, so sad, what terrible luck”. One thing that a serious illness gives you is further ability to discern depth of, and in, emotional intelligence, and how an individual applies that to others.
Naturally, what’s worse than spoken pity, is saying nothing at all. And granted, some people just do not have it in their limited character to reach out. So to those “close” to me who know of my diagnosisthat still haven’t said anything – you suck. Do better. Learn a little compassion so your children won’t suck as well.
In relationships
A few days ago, on one of the MND support Facebook pages, a post asked: “What do you wish your loved ones had said or done when you were diagnosed?” I thought wow, great question, this is going to hit a nerve for so many.
The most poignant and acknowledged answer I have copied and pasted below:
“I wish my husband would of shown more emotion, would of said that we will get through this together and that we would start prioritizing spending time together and doing the things we were putting off till we were retired. Instead he didn’t even seem phased, walked out of the Dr office with me and didn’t even say a sympathetic word or act sadden. He went into some sort of denial and treated me like I needed to try to work harder at healing myself. He would tell ppl I was doing just fine instead of the truth or tell ppl that I believe it’s ALS bc the Dr said it was and I was just giving up instead of trying harder to find another diagnosis or trying to exercise to get function back (despite it taking 3 years and 5 different Neurologist to diagnose me). It shattered me and made me feel the most alone and unloved that I’ve ever felt in my life. It took a year for him to come to terms but in that time I was dealing with this devastating news on my own which lead to a dark depression. I understand that it’s a hard diagnosis for family to hear as well but the way he and my other close family acted (similarly to him) felt insanely selfish to me and I ended up feeling a lot of resentment and hurt towards them. Tbh, I still harbor some of that resentment to this day despite them finally realizing the reality of my diagnosis. I’ve read posts from PALS who have had similar experiences with spouses, children and family. As hard as it is to hear that loved one has been diagnosed with ALS, to go into your own shell, denial or pull away is selfish and weak. I wish that people realized that the one who received the dx is terrified and shouldn’t have to deal with the bs of their loved ones putting their own feelings or emotions about the diagnosis first before theirs loved one who was diagnosed. What a person diagnosed with ALS needs in that time and the journey to follow is love, understanding, compassion and above all, support. Time with a PALS is fleeting and precious, show them that you are and always will be their safe place.”
“What do you wish your loved ones had said or done when you were diagnosed?”
There are so many layers and aspects to this, the denial, the lying, the telling people she believed her neurologist instead of fighting for another diagnosis!? So much incompetence here that it is almost abhorrent. No, actually, it IS abhorrent. Imagine dealing with the blow of a terminal diagnosis, and then such crushing disappointment at the same time. Time and again I really do wonder how some people are married. And time and again I realise that going it “alone” (in the sense that you have no partner) is probably and potentially not such a bad thing. I don’t think anything could trump the disappointment and downright betrayal of having a useless partner when you need them most. And if you have gone or are going through this, I’m so very sorry. You deserve so much better.
There is absolutely room to give consideration that many people do not know what to say/do/act in such a terrible situation. However when you say the words “in sickness and in health”, or even when you’re in a committed relationship, it becomes your responsiblity to LEARN how to be a decent partner and person.
Wives weather the storm
On a similar vein, it is known that heterosexual marriages or relationships are more likely to end if/when the wife becomes ill, as opposed to the man. This articles explores this sad subject, (though only provides a few questionable answers to the question posed in its title):
I’ll finish this post by quoting its last paragraph:
“Who will be there for you?” and “How will you manage?” are not questions relevant solely to single people.