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The Patient Translator: What to Say to Someone Who…

At some point in your life (or, let’s face it, many times), someone you care for – a friend, a colleague, a partner, a child – will be diagnosed with a health condition. And when that time comes, your brain will likely start to misfire with a slew of half-baked yet earnest questions: What should I say? How should I act? What can I do? What’s actually going to be helpful?

Not only are those questions ping-ponging around inside your skull totally normal, they are also a sign you care. So, take it easy on yourself – health from the patient’s perspective is wildly tough, but health from the I-care-about-you-but-I-don’t-fully-get-it perspective comes with its own set of challenges as well.

As someone who’s about two decades into her diagnoses, I’d love to give you a tip – sometimes the most well-meaning comments and questions can have the opposite effect on the person who’s struggling. But have no fear, friend! This is where The Patient Translator comes in.

The concept here is simple: I assembled my fellow Mighty staff members to tap into their own lived health experiences. Together we pooled the comments and questions that sometimes frustrate us, translated them into what we really hear, and then offered some suggestions for what we wish people would say instead.

Looking to navigate a conversation around a particular health topic? Use the links below to start “translating”!

 

Chronic IllnessDisability | Neurodivergence | Rare Disease | ParentingMental Illness | GriefTrauma

What to say to someone with chronic illness

When you say: “Have you tried [insert diet, treatment, or exercise here]?”

What I hear is: “You aren’t doing enough to feel better. Try harder.”

What I’d love to hear instead: “What’s working for you best in your treatment plan right now? What kind of changes do you want to make?”

Learn more from our community’s experiences:


 

When you say: “I’m praying for you/thinking of you/hoping for you to get over this illness.”

What I hear is: “If you had more faith/positivity, all of this would go away! Your illness is just a bump in the road that you have the power to change.”

What I’d love to hear instead: “How can I support you as you continue your maintenance treatment for this condition? How do you want me to show up for you?”

Here are more perspectives to learn from:


 

When you say: “This too shall pass.”

What I hear is: “I haven’t heard a thing you’ve said about your condition, and I haven’t bothered to look into it either.”

What I’d love to hear instead: Silence. If you feel like you absolutely need to say something in the moment, “That sounds really hard” will do the trick.

Learn more from our community’s experiences:

What to say to someone who is disabled

When you say: “I don’t see you as disabled.”

What I hear is: “When you do struggle, I’m going to put ‘able-bodied’ expectations on you.”

What I’d love to hear instead: “I see you as a whole person. If you struggle with something and need help, I’m here to help you.”

Here are more perspectives to learn from:


 

When you say: “You don’t look disabled.”

What I hear is: “I have a very small view of what disability looks like, and you don’t fit it. You must be making it up.”

What I’d love to hear instead: “How does that look/present for you? Are there accommodations/changes I can make that would be helpful?”

Learn more from our community’s experiences:


 

When you say: “Those people who fake a disability to get benefits make me so angry. They hurt people like you who are actually disabled.”

What I hear is: “I don’t take invisible disabilities seriously, but you’re one of the ‘good ones’ with a visible condition and deserve help. Also, if you tell me about your neurodivergence and PTSD, I’ll dismiss them as no big deal compared to your mobility disability.”

What I’d love to hear instead: “It makes me so angry that people with disabilities have to struggle to get the support and acceptance they need. How can I help advocate for change?”

Here are more perspectives to learn from:


 

When you say: “You’re such an inspiration.”

What I hear is: “If I were you, I wouldn’t want to be alive. You’re a hero for just existing in a disabled body without hating your life.”

What I’d love to hear instead: “That’s really great that you [insert actual accomplishment or interesting thing about me here].”

Learn more from our community’s experiences:

What to say to someone who is neurodivergent

Neurodivergence is an umbrella term for people who think and perceive the world differently. Autistic people and individuals with ADHD, sensory processing disorder, and some who have mental illnesses may identify as neurodivergent. You can learn more about neurodivergence and the neurodiversity movement in this article.

When you say: “Everyone thinks they have [insert condition here] these days. You’re fine.”

What I hear is: “I don’t trust that you know yourself, I don’t care what you’ve been through, and you don’t know what you’re talking about.”

What I’d love to hear instead: “I’ve been hearing a lot about that recently, and my understanding is that it presents differently for everyone. How does it present for you?”

Here are more perspectives to learn from:


 

When you say: “Have you tried using a planner?”

What I hear is: “You are disorganized and haven’t even tried a simple solution. This is the only fix.”

What I’d love to hear instead: “How can I help support you to keep you on track? What ways work best for you? What haven’t you tried that may interest you?”

Learn more from our community’s experiences:


 

When you say: “Everyone’s a little autistic.” / “Aren’t we all on the spectrum somewhere?”

What I hear is: “Your experiences being autistic aren’t valid and don’t matter.”

What I’d love to hear instead: “I’d love to know about your experiences being autistic/on the autism spectrum. Can you tell me more about what you go through so I can support you and make you feel less alone?”

Learn from our community’s experiences:


 

When you say: “Aren’t you a bit old to like [insert special interest]?”

What I hear is: “Your special interests are not appropriate and you should feel ashamed to like them. You should hide that part of yourself.”

What I’d love to hear instead: “What do you like about [insert special interest]? I’d love to know more about what draws you to it.”

Here are more perspectives to learn from:


 

When you say: “Stop acting out. Tantrums are for children, not adults.”

What I hear is: “You must conform to how I expect people to act when they’re upset. Your way of handling your emotions is invalid.”

What I’d love to hear instead: “How can I best support you through a meltdown?”

Learn more from our community’s experiences:

What to say to someone with a rare disease

When you say: “Oh, I saw your disease on an episode of [House/Grey’s Anatomy/E.R./General Hospital/etc.]. It sounds so cool!”

What I hear is: “You must have had such an easy diagnostic process and straightforward treatment plan. Your disease is a novelty fabricated for my entertainment.”

What I’d love to hear instead: “I’ve only heard about your disease from a TV show. If you don’t mind sharing, what do you want me to know about actually living with this disease?”

Learn more from our community’s experiences:

What to say to someone who is a parent of a child with a health condition

When you say: “Parenting is hard for everyone. Kids these days just need more discipline and less screen time!”

What I hear is: “I don’t care about your experience of parenthood, do it how I think is best.”

What I’d love to hear instead: “Parenting can be hard. What’s going on? Do you want to talk about it?”

Here are more perspectives to learn from:



When you say: “I can’t imagine [having a child with a disability/chronic illness].”

What I hear is: “I don’t want to talk or think further about the realities of living with a disability. Let’s end this part of the conversation and move onto something more palatable for me.”

What I’d love to hear instead: “Tell me more about your son/daughter/child.”

Learn more from our community’s experiences:

What to say to someone with mental illness

When you say: “What is there to be depressed/anxious about? Just cheer up/relax!”

What I hear is: “You’re keeping yourself stuck in this place by not trying hard enough. Also, I don’t believe it’s actually an illness.”

What I’d love to hear instead: “I can’t imagine what that must be like, but I’m here for you in any way I can be. How can I support you?”

Here are more perspectives to learn from:


 

When you say: “Just keep your head up and look on the bright side. It’ll get better, you got this!”

What I hear is: “Your illness isn’t actually that complex, a positive attitude is all you need to feel better.”

What I’d love to hear instead: “I’m here for you regardless of what the future holds. I know I don’t understand all of it, but I’m here to support you.”

Learn more from our community’s experiences:


 

When you say: “Don’t isolate, you need to reach out and spend time with people!”

What I hear is: “You should reach out and spend time with people, but not me. I don’t want to deal with you.”

What I’d love to hear instead: “I’m sorry you’re feeling like you have to isolate. What are you doing right now? Can I call or come pick you up?”

Here are more perspectives to learn from:


 

When you say: “Oh I was depressed when X happened, and I drank this juice/tried this oil/took a walk and felt better!”

What I hear is: “You’re making it up, it’s not that bad, you just need to make a change and everything will be great.”

What I’d love to hear instead: “I was depressed when X happened. I remember it was really hard. If you ever want to talk about some of the tools I tried, feel free to ask!”

Learn more from our community’s experiences:


 

When you say: “Nothing is impossible if you put your mind to it.”

What I hear is: “It’s OK to sacrifice your mental health in the name of accomplishment.”

What I’d love to hear instead: “You are worth more than your accomplishments. Follow your dreams, but go at your own pace and don’t push yourself past your limit – it’s not worth it.”

Here are more perspectives to learn from:


 

When you say: “Just let it go and move forward.”

What I hear is: “You are broken because these feelings won’t go away easily. You are too sensitive.”

What I’d love to hear instead: “Your feelings are valid. How can I support you to help ease the tension or distract you?”

Learn more from our community’s experiences:

What to say to someone who has been struggling

When you say: “Wow, you’re so brave. I couldn’t have gone through that.”

What I hear is: “Wow, I can’t even tell how much you’re struggling with your mental health through this!”

What I’d love to hear instead: “While I know I can’t fully understand, this must have been a really difficult experience and I’m here to support you however I can.”

Here are more perspectives to learn from:


 

When you say: “You back in today?” (in a work context)

What I hear is: “Are you back to working at full capacity today?” I know this question. It means you’re testing the waters. This isn’t an “Are you feeling any better today?” You just want something. What do you want? Can you soften the approach a little more so I can pretend that it’s coming from a caring place?

What I’d love to hear instead: “I’m sorry you weren’t feeling well yesterday. Hope today is looking up.”

Learn more from our community’s experiences:


 

When you say: “How are you doing?”

What I think is: “…Like, emotionally? Physically? Existentially? Just at this very moment? Since the last time we talked? Are you asking me for my feelings on big picture/overall life trajectory stuff? Wait, how am I feeling about any of that right now? Do I not look like I’m doing OK? Am I not doing OK? Are any of us doing OK?…”

What I’d love to hear instead: “How are you doing today?” (Honestly, even the littlest bit of specificity makes the biggest difference in keeping the spiraling at bay.)

Here are more perspectives to learn from:

What to say to someone who has lost a loved one

When you say: “Your [loved one] wouldn’t want you to still be feeling this way.”

What I hear is: “If you were strong enough, you would be over their death by now.”

What I’d love to hear instead: “I’m sorry your grief is still weighing so heavily on you. Everyone grieves differently, and what you’re experiencing is valid, but you might need a little help in order to heal. What can I do to support you through it?”

Here are more perspectives to learn from:


 

When you say: “I’m sorry for your loss.”

What I hear is: “I don’t know what to say and I don’t want to be awkward so I’ll say this, and mean it, but also hope we change the subject to something fun soon so I don’t have to sit here awkwardly.”

What I’d love to hear instead: Every loss is different and there is no “right” thing to say. Keep these two things in mind: try not to make it about you or say something simply out of obligation. Your responsibility is to show up for the other person, not to “fix” their grief.

Learn more from our community’s experiences:

What to say to someone who has lived through trauma

When you say: “Why didn’t you tell me at the time?”

What I hear is: “I don’t believe you buried your abuse. It’s your fault.”

What I’d love to hear instead: “I’m sorry this happened and I didn’t know. I can’t make up for the past, but please let me know what I can do to support you now.”

Here are more perspectives to learn from:


 

When you say: “Time heals all wounds.”

What I hear is: “I don’t know how to help you whatsoever. You’ll get over it eventually.”

What I’d love to hear instead: “What matters is what you feel right now and in this moment. Time doesn’t heal all wounds, and that’s OK.”

Learn more from our community’s experiences:


 

When you say: “You need some self-care.”

What I hear is: “You don’t know how to care for yourself.”

What I’d love to hear instead: “That sounds really tough. Do you have the support you need?”

Here are more perspectives to learn from:


 

When you say: “What doesn’t kill you makes you stronger.”

What I hear is: “It’s OK for people to go through tough and traumatic experiences because it should make them stronger, and if it doesn’t, it’s their own fault.”

What I’d love to hear instead: “No one deserves to experience trauma, and even if the experience forces you to be ‘stronger,’ that doesn’t mean it’s OK that it happened.”

Learn more from our community’s experiences:


 

When you say: “But you have built a good life.”

What I hear is: “Your trauma doesn’t matter.”

What I’d love to hear instead: “You can have a good life and also experience trauma – these are not mutually exclusive. I’m sorry that this happened to you but I’m here to support you in any way that I can. I hope you can feel safe with me.”

Here are more perspectives to learn from:


 

When you say: “It could have been worse.”

What I hear is: “What you went through wasn’t that bad. You should be over it by now.”

What I’d love to hear instead: “I’m sorry that happened to you. How are you feeling about it now? How can I support you?”

Learn more from our community’s experiences:


 

The Mighty is proud to be staffed by people who have lived experience with a variety of health conditions and disabilities. Thank you to Ashley Kristoff, Ben Berkley, Brittany Johnson, Camara Rauen, Francesca Dalleo, Genevieve DeRose, Jess Sells Wertman, Karin Willison, Kelly Douglas, Matt Sloan, Monique Vitche, Sarah Schuster, and Skye Gailing for their contributions to this piece!

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