Invisible Conditions and the Complexity of “How Are You?”
One of the hardest things about living with an invisible condition is needing to decide multiple times a day, every day again, how you’ll respond to the question: “How are you?”
You want to be positive and also honest.
You want to be open while knowing not everyone will be equally understanding.
You want to be truthful without sounding negative.
You want to share but it’s often not the time nor the place to do so.
You want to let people in while being scared of pushing them away.
You want to say something while knowing that the next time, you might not want to talk about it.
You want to say “good” and not think about it but also not feel alone.
On the good days, it’s easier. On the hard days, it’s hard.
On most days, and with most people, you feel like you shared too little, or not enough, or the wrong thing.
“Beyond physical challenges, people with invisible illnesses also shoulder unique emotional baggage. Every day brings weighty decisions about whether or when to disclose their condition and how to deal with possibly mixed reactions. People can’t see your suffering, so they may not understand or help you. They might not even believe you.” (Maureen Salamon for Harvard Health Publishing)
The Need to Be Understood
When you’re getting to know someone new, you are usually able to figure out slowly, over time, whether they’re someone you’d feel comfortable sharing more personal things with. That applies when you’re dating, making new friends, connecting with people in your industry, and so on.
When you’re dealing with something chronic, something that is present every day, it can feel as if the question “How are you?” forces you to speed up this discovery process. It’s as if you need to decide then and there, every day again, how much you put out there.
Of course, this isn’t really the case.
People don’t know what they don’t know and you’re never obliged to disclose anything to anyone. There are people who have it as an unwritten rule that they always say they are ok and only share when they are not with a select group of people.
I think those people have let go of the need to be understood. Or, at the minimum, to be understood by everyone.
Perhaps, they only care whether certain people make an effort to get what they’re going through. Perhaps, they’re even further along in their journey and are happy with simply being believed and supported.
The Need to Remain in Control
On the other hand, the more people you share something with, the more you lose control over when and how you’re contronted with it. This goes for everything, not just chronic conditions.
People may ask you how it’s going with x when you’re not thinking about x and also don’t want to be thinking about x.
When we haven’t yet learned to face something from a place of emotional neutrality or positivity, it’s truly scary to know that at any moment, someone may interrupt your temporary joy, calm, or lightness by asking about x.
So how do we share while mitigating the risk of someone “ruining our mood” because they’re kind enough to ask us how things are with x?
We grow our capacity, we build trust, and we set boundaries.
We grow our capacity so that we’re not as easily thrown off.
We learn to regulate our nervous system and build a kit of tools we can use to get back to our center whenever we need it.
Growing your capacity does not mean pushing yourself over your limits, nor does it mean incessantly trying to go beyond our comfort zone. It means slowly expanding your comfort zone while allowing yourself time to rest and recuperate after every little win.
We grow our trust in ourselves.
It’s not enough to grow your capacity. We also need to give ourselves credit for doing so.
Each time we hold space for something, each time something throws us off a little less than it did before, we take a moment to celebrate this and grow our trust that we can handle whatever comes our way.
We offer trust to others and set boundaries.
Whenever we share something with someone, we’re saying: “I trust you with this piece of information.” That trust comes with responsibility, but that responsibility doesn’t just lie with the other.
If a topic is sensitive to you, if there is something you don’t want to be constantly reminded of, you can tell the other person. Say “Hey, I know you care and might want to know how things progress with this, but I’d prefer if you don’t bring it up with me. I’ll share things when I am ready to.”
Not only are you trusting the other person with what you’ve shared, you’re also trusting them to respect your boundaries.
What About Telling the Truth?
You might think, as I have often done: “But if I tell someone I’m ok when I’m not, then I’m lying.”
I’m quite sure that for me, this reaction came from a need to feel seen, but if that’s not the case for you, perhaps try one one of these perspectives:
- You are inherently ok. Whatever is going on with you, there is an essence of you that is and will be ok. That is unshakeable. That is the part of you your growing when you’re growing your capacity.
In my case, it also helps to believe that I can change things. What I’m facing doesn’t need to be permanent. - You are not that one thing. While some chronic conditions such as severe trauma or health conditions can be noticeably present every single moment of the day, we are not these things. We have other things in our lives, however small, that are ok. They may even be great. Think of friendships, a cozy home, a loving partner, a hobby that brings you joy or the sunshine coming through your window.
Figuring Out How to Answer “How Are You?”
Living with an invisible condition is living with a lot questions of which the answers can offer both opportunities for and boundaries around connection.
If you’re not sure yet of you’re general approach to “How are you?”, it may help to ask yourself the following questions:
- Will I reply truthfully when someone asks me how I am?
- How much of my story am I willing to share, and with whom?
- Am I able to handle it if someone doesn’t understand?
- Am I able to handle it if someone doesn’t care?
- Am I ok with someone seeing me differently?
- Am I ok with someone not seeing me differently at all?
- Do I only share when I choose the time and place, or do I let circumstances force my voice?
- Do I lead with vulnerability, even if that leads to disappointment, or do I lead with self-protection, even if that leads to loneliness? Knowing that vulnerability may lead to connection, and it’s ok to self-protect at times.
What to Do When Someone Is Dealing with a Chronic Condition
Perhaps you’re reading this article because you know someone who is dealing with something chronic, or perhaps you’re merely reading it out of interest.
If you’ve gotten this far, I hope you see that a true “How are you?” is not a substitute for “Hello.” It’s an invitation for the other to share. And if you want to make them feel safe to do so, here are a few suggestions:
Believe them
When someone has broken a leg, the problem is visible. They’ll wear a cast, use crutches, and hobble around in a way that’s certainly different from what’s considered “normal walking.”
A lot of chronic conditions aren’t that visible. So when someone tells you they have x, believe them.
- That person who is always quiet may suffer from social anxiety..
- That person who always makes short appearances at events might struggle with chronic fatigue.
- That person who never joins dinner parties may have severe digestive issues..
Similarly, it’s not because someone looks fine, that they are.
- That person who is always joyful may be working daily to create more mental and emotional capacity for what’s happening in their body.
- That person who is incredibly productive might be on a lot of medication to be able to function.
- That person who is dancing for hours at an end might do so because it’s the only thing that allows them to log off from whatever else is going on.
I know, it’s much easier to understand that someone who doesn’t leave their house is struggling with something, than to feel the same about someone who keeps living their life to the best of their abilities.
But I hope you won’t make someone feel like they’re being “punished” with disbelief for making the most of things. For choosing joy. For trying to elevate their mood when it would be so much easier to crawl on the sofa and zone out.
Contain your urge to problem-solve
It’s much easier to offer advice than to hold space for someone without acting.
It’s much easier to say: “Don’t worry. It’ll be fine.” than to simply listen.
It’s much easier to ask if they’ve tried a, b, or c than it is to say “This really sucks for you. Is there anything I can do?”
It’s often even harder to then actually do the thing they say would help them than to do the thing you feel like doing to help them.
All the possible solutions you think of, that person has probably already tried or has a good reason not to try.
Unless you know someone well and you believe that there’s something blocking them emotionally or mentally on their path to getting better, assume that they’re doing their best. Assume that they know more about their condition than you do.
And if you’re not sure what to do, ask:
- “Would you like my thoughts or a hug?”
- “Are you open to me sharing this tool/treatment/… I’ve come across?”
- “Is there any way I can help you figure this out?”
Let them know you’re there
A lot of people suffer from “I don’t want to bother anyone,” so the biggest thing you can probably do is repeatedly show someone you are there for them.
That doesn’t mean you always need to jump when someone needs you.
It means you make sure that they know they can share with you when they’re having a hard day, that they can ask for help, and that you care.
You can always so “no” when you don’t have the capacity to listen or help.
Boundaries go both ways.
Simplifying “How Are You?”
In this article, I’ve purposefully kept the idea of a “chronic condition” vague. The brain and the body constantly influence each other. Heck, I don’t even know why we make the distinction. The brain is part of the body.
When you’re dealing with something that affects your day-to-day life over a longer period of time, the question “How are you?” is a constant reminder of that thing. Answering it can become easier when you grow your capacity and your trust in yourself, and when you accept that you may not get the reaction you’re hoping to get.
When you know someone who’s dealing with a chronic issue, believe them when they tell you they’re not well. Trust that they’re doing their best to get better. Know that they probably need kindness more than advice, and decide in what capacity you want to be there for them.