I have learned A LOT about how to approach people who are going through a hard time since Lily’s diagnosis. The most obvious thing I’ve learned is how I’ve been doing it all wrong. Say your friend’s mom recently died, or someone you sort of know has a kid who has been diagnosed with cancer – what’s your first reaction? If you’re like me, you probably feel terrible for them on the inside, but then quickly turn to avoidance. How could you possibly say anything that would make them feel better? Probably best to leave them alone, right? WRONG.
I believe most people want you to say something. And the more personal you make that effort, the better. Commenting on their Facebook post about their recent tragedy is nice (again, I’m SO guilty of leaving it at this), but could you go a step further? Could you send them a direct message, an email, or actually call them? When Lily was diagnosed, I received a lot of phone calls and I was too consumed and overwhelmed to answer most of them or return the voicemails, but the fact that these people called me meant A LOT. I also had some friends who I had sort of lost touch with reach out in direct messages on Facebook and that honestly meant a lot too – they said some incredibly kind things that warmed my heart.
What’s Not Helpful
Let me preface this by saying that I absolutely know people who said the following things to me meant very well. They were trying to comfort me, or acknowledge how hard this new reality was. And I don’t fault them for it. I likely would have said the same things had the tables been turned. I’m just sharing so that maybe it will help others know what to say and what NOT to say to someone who has just been punched in the face by life (some of these are very specific to a type 1 diagnosis).
- “At least it’s not cancer.” Cringe. At first, I kind of bought into this. But it’s just so not helpful. Cancer fucking sucks. So does type 1 – and there’s no chance of remission. You shouldn’t compare two evils like this, especially when it comes to children living with them.
- “It will become your new normal.” This is a very common one. Unfortunately, injecting my daughter with a man-made hormone to keep her alive won’t ever feel normal to me. The fact that she wears a machine around her waist to try and mimic her pancreas is not normal. Watching her shake and become disoriented when her blood glucose gets too low won’t ever feel normal. The fact that she can’t so much as eat an apple without getting insulin isn’t normal. We do get stronger and we become better at dealing with all of it, but normal isn’t the right word.
- “My dog has diabetes/cancer/fill-in-the-blank.” JUST NO. Don’t compare pets to people.
- Not asking how they are managing. Saying something as simple as, “How are you holding up?” Or, “Are you guys doing OK? It’s got to be so hard.” Or, just acknowledging that you know nothing about what they’re going through but would like to learn is great.
- Sending articles about how cinnamon (or whatever) can cure diabetes. Nope. If and when there’s a real cure, we’ll all know it. Diabetes was one of the first diseases ever recorded, with an Egyptian manuscript from 1500 BCE mentioning “too great emptying of the urine.” Indian physicians around the same time identified the disease and classified it as madhumeha or “honey urine,” noting the urine would attract ants. So, what I’m saying is, it will be a big deal when there’s a cure. And if cinnamon or fasting alone cured it, there would already be no more diabetes.
- I could never give my kid shots. Umm, yes you could if it kept them alive! This might seem like a nice way to say, “you’re very brave,” but for some reason it just makes me mad. I don’t want to hurt my kid everyday with finger pricks, pump changes, Dexcom insertion, shots, etc, but I do it because I HAVE TO. Any parent would.
What’s Almost Always Helpful
- Food. No one wants to worry about feeding themselves or their family when they’re going through a hard time. I’ll admit, though, that bringing food to a family newly diagnosed with type 1 is maybe not the best thing because food all the sudden is very scary. So, maybe this one holds up better for other traumas.
- A phone call, an email, or a handwritten note. All of these mean so much.
- A listening ear. Sometimes people just need to talk and have someone compassionately listen. Be interested in their new reality.
Again, this is a HUGE learning process for me too. I feel like I’m not very good at saying the right thing to someone who’s going through something hard, but it’s a goal of mine to be better and this experience is certainly helping.