It’s great when people care about you – surely?
What about if people blatantly don’t care about you? It may be hurtful, but you’re quite clear where you stand with them.
When people do care, care a lot, and know you have a terminal diagnosis, you will likely have to deal with a lot of well-meaning activity. Some of this will be great for you, and some, not so great. The better prepared you are for this, the easier it will be to deal with, both mentally and practically.
Let's dive into "how":
Activities she loved to be involved in, she was discouraged from continuing with. Usually with something like “don’t worry about that, someone else will cover it”. Thing was, she didn’t want someone else to cover it, SHE wanted to do it. This may not even be a volunteering activity, but something as simple as an invite to a social event.
This is a double-whammy: as the ill person, not only are you getting the message that you are no longer useful; but practically you miss out on an opportunity to contribute with something you enjoy doing.
The root of this problem is that others were assessing whether the ill person should/could continue with the activity based on their own assumptions about the illness and treatment.
Something fascinating is that when challenged about the “don’t worry…” message, people frequently get defensive, somehow seeing it as their role to be the custodian of others’ well-being even without their consent.
There may be activities that you recognise that you can’t or shouldn’t do, that’s life. But…
when you recognise an activity within your ability, a helpful approach is to get a friend as an advocate for you, to speak on your behalf. Make sure the friend understands what you want, and them get them to go into bat for you. I did this for my wife and found that the conversations were much easier for me to have than when she tried to have them.
This seems unfair, but in the interest of pragmatism, why not give it a go?
Don't say things like that - be positive!
Ever heard this?
Someone shutting you down because they think that always putting a positive outlook will help you.
This is simply harmful.
If your friends and supporters shut you down when you want to get something off your chest, it makes it more difficult to process your emotions, and you''ll be less likely to grow that relationship.
It's important and necessary for you to work through what you're feeling and you need to find people you can safely do this with. Why not train your friends and loved ones?
Preferably when you're having a good day, have the conversation with people you see often on how they can best support you.
It is tricky though: there are times when you need someone to snap you out of a misery. It's going to be a balance, you're not always going to know when, and neither will they, so forgiveness and love will need to be the order of the day.
And here's the irony, sometimes the problem is just the opposite to getting shut down or shut out:
you get an influx of people when you just want to be left alone
When close friends and loved ones find out how ill you are, they like to feel they are doing something. This can be overwhelming - rather than everyone rushing in, you may want some space. Especially if you're very ill, it's natural to close down your relationships to the essentials.
I have friends that love to put together "meal rotas" for those very sick in our community - this can be an amazing blessing, or it can put expectations on the recipient - they have to come to the door, they likely have more food than they know what to do with, and limited freezer space.
As with getting shut down, it will help if you get in first and lead people on how they can best support you. If they don't always get it right, be grateful people care enough to engage!