Five Ways to Respond to “How Are You Feeling?” When You Have a Rare Disease

January 3, 2015

with updates from 2023!

When you’re having an off day because of your rare disease (and lets face it: is there ever really an “on” day?) it can be hard to figure out the best way to respond to “how are you feeling?” So many questions start racing through your mind: do they really care? Will they be annoyed if I’m honest? Are they just being polite? Wait, did I already tell them I was sick?

Between coworkers, friends, and family, it can be a minefield of social destruction trying to find just the right words to say, I’m feeling like I crawled out of my grave this morning without sounding like a Debbie Downer.

You will always have people in your life who really do want to know–and you’ll feel comfortable and free to unload your stress if they’re offering an opening. But for the holiday dinner parties with your uncle’s best friend’s sister-in-law? Here are six reasonable ways to respond to the question without having a full throttle meltdown.

1. Sugarcoat it: “Good! You know, I have my off-days here and there, but I’m hanging in there.

2. Flip it. “I’m alright! But what about you? I heard you just graduated–congrats!”

3.  Current Events: “Not great, but probably a lot better than the CEO of Sony, right?”

4.  Tactical Diversion. “Solid, but oh my god, have you tried these cheese puffs? No? Just be ready to back me up in taking one of these waiters hostage if they come around with the tray.


5. Change the Direction: “I’m feeling so relieved that I finished all my holiday shopping just in time! Thank god for 24-hour-gas stations, am I right?”


Helpful suggestions from Global Genes Staff (2023 Updates)

So many of us facing the challenges of life with a rare disease struggle with what seems the easiest of questions: “How are You?” 

 It’s a casual question that can, for us, defy a casual answer. We worry that the standard answer of “good” will seem disingenuous but that a more detailed answer might derail the day of the person asking if they weren’t prepared for all the weight of our daily struggles.

We asked a few Global Genes staff who live with RARE Disease in their families how they navigate this simple but tricky question.

Mary MorlinoMary Morlino (lives with Sarcoidosis)

My response is often, ‘I’m upright.’  with a smile and easy laugh to put them at ease.  Interactions are yet another thing we, as rare patients or caregivers, have to consciously manage.  The voice in my head may toy with the idea of giving them a truthful answer, but I know most likely they are well intentioned, probably a bit uncomfortable and I want the flow communication to be relaxed.  Depending on the relationship and the situation, I may offer a bit more information.  I have found most people don’t want to go much deeper, they are being polite. I think having a relatively invisible illness makes it easier for some people to not ask how I’m doing.

Effie Parks (mom to Ford, who has CTNNB1)

I have decided that when someone asks me how I am doing I am going to say, “I’m feeling bittersweet these days.” 

I think that is something everyone can find common ground in and might just open the door a little wider for them to dig deeper into our lives.

Lara Bloom (lives with Ehlers Danlos Syndrome)

I have always thought that the majority of the time when people ask how you are, they usually don’t really want the real, full answer. However, despite living with daily health challenges, my answer usually is ‘good’ and I mean it! I find there is always something good in a day, and when people genuinely want a more detailed, sometimes more honest answer, they keep asking questions.

daniel defabio headshotDaniel DeFabio (dad to Lucas, who had Menkes Syndrome)

I adopted a strategy for this. I knew if I answered “we’re good”, so people would be confused. They know Lucas is not in good health. Did I mean he improved? Was i in denial or avoiding their question? So I began to answer: “We’re good, and what I mean by good is we’ve had no surprise hospital visit for 7 months.”  


Irie LongIrie long (Married to Robert Long, diagnosed with grade III anaplastic astrocytoma)  

Rob has adopted a similar strategy, especially running into people he has not seen in a while. When he hears the undertone in the voice that says “Where you at with cancer” but comes out as “How have you been?”

His typical response is something along the lines of “I am good, healthy, still getting scans every few months, now 12 years cancer free.”

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🤐 When the simple question “How Are You?” can send you into a tailspin…

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Jennifer Siedman of Courageous Parents Network talks about the “SuperMarket Answer” for when you just can’t get into all the details of how you are really doing. This CPN article gets into other tricky questions we may have to handle.

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The “SuperMarket Answer” is discussed in this short podcast, episode 164  of “Stronger Everyday”

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Daniel wrote about it for The Mighty on Yahoo Life.

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Daniel’s show Pain Points talks about the “How Are You?” trap.

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