How do I talk with my family about my illness if they’re trying to pretend nothing is happening?
July 12th, 2020
This is so classic? If you know someone who is super comfortable talking about the truth of your illness, have them there when your family is present. Then talk really openly with that friend, like, “Well, if this doesn’t work, they say my survival time is less than 6 months.” The family might be peeling out to go pee or something. But at least you let them know you are comfortable talking about it because a lot of times people assume, “Oh we can’t bring it up. S/he doesn’t want to talk about it.” When really, you really do.
The other thing is – it goes both ways – you can invite someone to talk with you about your feelings about death or dying or treatment or disease, but that’s all you can do is invite. It’s up to them to accept the invitation or not. There’s nothing wrong with inviting a couple of times or three times. Maybe that third time, they’ll be in. Or maybe they won’t.
And last, the more matter of fact you can be, the easier it is. If you’re freaking out and awkward and weird, it’s going to be so hard. Just like talking to your kids about sex, if you’re just matter of fact about it, then they’re like, “Oh, ok, that’s how that works.” Death and sex!
July 12th, 2020
If you're in a situation where you're ready to have conversations and you have family who aren't, you can gently try and do it and if that doesn't work, I would ask your primary care physician or oncologist or specialist, for resources. For example, I work at Dana Farber and we have social workers who work with families. The social workers can talk with families or provide a patient with resources.
It's worth mentioning that sometimes patients don't talk with family members because they're trying to protect them and sometimes family members don't talk with patients because they're trying to protect the patients. There can be a lot of concern that if they bring up the possibility that things don't go well, that the chemotherapy won't work, that the heart transplant doesn't happen, that they're giving up or not fighting or believing in hope, some kind of breech of faith that can feel like betrayal. So they hold their own worries instead of sharing. The patient may be feeling worse but not telling, or the spouse may be noticing the patient is losing weight or more tired, but not saying anything because they think, "I don't want to scare them".
That kind of thing happens all the time and it comes from love and mutual protection. But it results in people worrying on islands, alone. So, if you want to talk but have these fears, just name it. You might say, "This may be hard for you, but it would be better if I weren't holding this worry by myself. I can find others to talk to, but I'd rather you and I do it together."