6 months ago
What Not to Say to Someone Going Through A Cancer Diagnosis
Since my daughter was diagnosed with Leukemia, I have felt a need to help people going through a difficult medical diagnosis. What we are going through is not ok or fair and there’s no reason it’s happening, but there can be some purpose in the pain. Sharing our story, raising awareness, fundraising, and helping others was a coping and survival mechanism during frontline, and it’s something I can’t ever imagine not doing.
I already talked about how to support someone immediately after diagnosis and how to continue to support someone through treatment. In an effort to help patients, parents, and friends that want to best support their loved ones on this long and painful journey, I want to share what has and has not worked for us as the months have gone by. I cannot speak for everyone, but I’ve been through it have heard from dozens of moms and patients who made me feel understood.
Some comments and gestures, even when said with love, can be tough to hear. If you’ve called Margot a warrior or have told me I’m strong, you have nothing to be sorry for. You meant well and I appreciate you. If I can help just one person in this process, this post will be worth it.
Here are the common statements that I keep hearing are hard for other parents to hear during their child’s cancer treatment, although I believe this can apply to most difficult diagnoses.
Do not assign labels or titles to the parent/child/patient.
I know everyone means well when referring to my toddler as a “warrior” but she’s not a warrior. She’s two. She loves dancing, rainbows, and her dollhouse. Not a warrior. If the parent calls their child a warrior, go ahead and use that language, but I would refrain from assigning a label that the parent has not used.
Do not tell me I’m strong or that you don’t know how I’m doing it.
I am barely getting by. What are my options? I’m no stronger than you, but I am a mom who has no choice but to keep going, no matter how hard it might be. I say this with so much love and know everyone means well, but hearing those words can feel really painful and they sometimes make us feel as if we had this coming. Strength isn’t why this is happening to me and isn’t getting me through this. It’s called love.
Do not talk about beating cancer or winning (or losing) a battle.
Those words imply that someone else lost, and it all comes down to diagnosis and modern medicine. Margot’s prognosis is amazing and she will be ok, but I will never say she won. She has favorable genetics, a high cure rate, and access to modern medicine. There are no winners and losers.
Do not try to have a “me too” moment.
If you spent a few weeks in the hospital with your baby, you cannot relate to what I’m going through. If you took your kid to the ER because he fell, you cannot relate to what I’m going through. The reality is that we all have different experiences, so I can’t tell a mom going through the same diagnosis that I know exactly what she’s feeling because I don’t. Each experience is unique, but I can relate. If you have not personally dealt with a cancer diagnosis, just say “I’m sorry, I hate this for you, I’m here for you”. It’s ok not to relate to what I’m going through.
Do not say he/she will beat this.
First, you don’t know that. And a reminder that no one “beats” cancer. No one wins. Because if that’s the case, it means someone else lost.
Don’t ask questions
I know how this sounds, but unless the question helps the person going through it (i.e. what’s your coffee order?) you shouldn’t ask. If the question isn’t going to help the patient or caregiver, don’t ask. You can’t ask someone how they’re doing after a cancer diagnosis. They are not ok. You can ask this question once they start engaging in normal conversations again.
Never ask about symptoms, diagnosis, or if it’s genetic.
These questions are never ok to ask, even a year later, unless asked by someone going through it. I’ve been asked all of these questions and they are very self-serving. They force the parent or patient to relive trauma to ease your mind, or to share information you don’t really need to know. Symptoms are so unique to each patient, so Margot’s symptoms won’t help you. If it’s not genetic, this was shit luck and completely devastating (that’s us). If it is genetic, we did this to our baby? There is no good answer. This information will be shared if and when your friend feels like sharing it.
Don’t say I can imagine, I can’t imagine, I can only imagine.
The intention is very pure but this makes it about you, and it’s not about you. You don’t need to imagine, but if you think about it, you can imagine it, can’t you? The reality is we’re living most people’s worst nightmare and you don’t want to imagine it. These questions all feel like a reminder that no one wants to imagine going through what we’re going through.
Someone once told me she couldn’t imagine and hoped she never had to. I hope your child never gets Leukemia, either. Thank you.
Don’t ask if the hard part is almost over or say it will be over before you know it.
Treatment for Leukemia very long. We finish maintenance in July 2022, so it will have been going on half of Margot’s life by then. Then we have monthly labs for another 3 years and labs every 3 months for another two years before she’s in the clear.
Life is hard for everyone. What I’m going through doesn’t mean that you don’t have problems or that your life is easy, but know your audience. My friends can come to me and do come to me when they need to talk, but wouldn’t have brought anything too heavy to me at the beginning, and waited until I had normal conversations before throwing anything at me. If your child has an ear infection and you’re worried, I’m probably not the friend to go to. Any mention of the ER or doctor appointments is extremely triggering.
At the end of the day, we don’t want you to forget that we’re still here, going through it. Check in. Say hi. Once the dust has settled, ask how we’re doing. When you notice that we’re more responsive and able to carry a conversation, ask how we’re doing. Send a funny gif or ask us to go for a walk. This is lonely and terrifying. We need you. Please don’t give up on us.