When I was born, it took five months to be diagnosed with cystic fibrosis, a fatal lung disease. When I was seven, a Google search led me to the information that I was terminally ill and would not live a long life. Naturally, I panicked, running down to ask my mother if the disease would kill me and if I had a clock above my head, counting down the minutes.
Now, the predicted age of survival is in the mid-forties, thanks to the many therapies coming out. While I am no longer technically terminal, my dear friend Gianna, who also had cystic fibrosis, was. She was on the list for a lung transplant, but there was a dry spell, and those lungs didn’t arrive. As she waited, her lung function continued to slip, until her body could no longer handle a transplant. She died on her 23rd birthday. I was devastated and terrified, because I was only four years away from 23. To this day, I wish we had had more conversations. I wish I could have shared the right words with her, rather than simple encouraging messages.
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Terminal illnesses are unpredictable at best. Someone who was running around with friends months ago can be diagnosed with cancer at their next checkup. Terminal illnesses don’t care about you or your life — they pop up and demand to be dealt with, no matter how inconvenient (though are they ever convenient?). Sometimes you win the fight against them. And sometimes, you don’t.
So, how exactly do you respond to someone with a terminal illness? And what should you not say? Below are my tips, which I have learned from firsthand experiences and discussions with other terminally ill friends and family members.
DON’T SAY: “Life’s unpredictable — any of us could be hit by a bus tomorrow!”
This is very true. However, as my mother put it to someone who told her this: “yes, but all of the buses are aimed at her.” When you have a terminal illness, you have a target on your back. Yes, you may be hit by a bus tomorrow. We may have our last day tomorrow, too, because we have been told that our days are numbered. This isn’t useful.
DO SAY: “Life is unpredictable, and it’s okay to be afraid. I’m here.”
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Full truth: we are scared shitless. Even those who have come to terms with their deaths, those who have filled out their Five Wishes forms, those who have said goodbye, are scared. Let us know that we don’t have to be strong and pretend that our death is okay and accepted, especially to make others comfortable with the thought of our passing. That validation means everything.
DON’T SAY: “Let me know if you need anything!” or “How can I help?”
Truth: we need so much support during this time. Emotionally, mentally, and physically, we are struggling. However, many of us don’t want to be seen as difficult or as burdens, so we’ll shrug the well-wishes off and simply say “thank you.” In the end, we probably won’t ask for anything from you. It’s easier to ask direct caregivers for help.
DO SAY: “I’m going to do XYZ for you.”
Rather than ask us how you can help, choose something you can do and tell us you’re doing it. This way, we won’t feel as though you’re simply sharing platitudes. This can be something as simple as visiting a few times a week or bringing us dinner in the hospital (because the stereotype is true: hospital food sucks) — the thought is sweet, and the follow-through means everything.
DON’T SAY: “Don’t give up!” or “Anything can happen!”
We aren’t giving up, we’re being realistic. Accept our attitude and allow us to be in that mental space. Toxic positivity (which we wrote about) can cause us to shut down entirely, and it can also lessen our trust in you to be there when worse comes to worse. And unfortunately, no: there is no reversal to a terminal illness. We have been given our prognosis, and we have to accept it.
DO SAY: “No matter what happens, I am here for you through all of it.”
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Your acknowledgement that we’re terminal reinforces the reality, but it isn’t necessarily bad. Knowing that you’ll stick around, no matter how bad it gets, is extremely meaningful. The reality is that people whom you’d thought would be there run when this news comes, and potential friends and partners ghost when they learn about your situation. To have someone sit in the darkness with us is huge.
DON’T SAY: “You’re so brave/strong” or “I could never deal with this.”
Surprise: we’re not brave or strong, we’re dealing. We’re scared (refer to the first point) as well. Also, we never thought we could deal with this either. We didn’t choose to have this terminal illness – it chose us. You could absolutely deal with this if you were given no other options. By saying that, you’re suggesting that you don’t want to deal with this, as if we do.
DO SAY: “You can tell me anything you want, and I’ll listen. I’ll be here.”
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As we go through the emotions of a terminal illness, we know that few can relate. We also know that few want to hear what we have to say, because shit is heavy. Mortality, depression, regret – it all weighs on us. Confiding in a friend – someone who cares and knows us best – is comforting. You don’t have to give advice or find the right words to say. Listening and sitting with us in this darkness is enough.
DON’T SAY: “It’s going to be okay.”
The world continues on no matter what, and our loved ones will learn to do the same, despite the pain. Things will be okay. But for now, things are not okay. With a terminal illness, you must live in the present in order to enjoy your final moments. So, yes. Things will be okay eventually. But right now? It feels quite the opposite. Please don’t invalidate us. Plus, our condition is terminal – we won’t get to experience the “okay” again.
DO SAY: “I love you no matter what.”
That’s it. That’s all you need to say. We love you too.
Have you had a loved one with a terminal illness? What did you say to support them? Tell us in the comments.
For More Tips On Helping A Loved One, Read These:
6 Ways You Can Help Your Loved One Through A Mental Health Crisis
Never Say These 10 Phrases To Someone Who Has Lost A Loved One
