If you have a friend with chronic illness but don’t know how to talk to them, it’s OK. You’re not alone. When you’re healthy, trying to get inside the mind of a person who is always in pain can be confusing. In order to understand chronic illness, you’re going to have to step outside your comfort zone.
That’s why I created this step-by-step guide. It will help you understand how to talk to someone with chronic illness (including what to say and what to avoid saying) and the best way to help us without making us feel worse.
Step 1 – Believe Us
There is nothing more important than this. If you don’t believe we’re really sick, following the other steps will be pointless. Being believed and validated is invaluable because we’ve been called a ‘hypochondriac’ more times than we can count.
Chronic illness is fickle. We’ll have our good days and bad days.
Just because we’re all smiles at the Wednesday matinee doesn’t mean a flare-up won’t kill our plans for Saturday. We are not “faking it”. This is the nature of the beast.
Step 2 – Practice “Active Listening”
“Most people do not listen with the intent to understand; they listen with the intent to reply.” – Stephen R. Covey
When you live with chronic pain, hearing dismissive comments is common. We are told by doctors that our problems are “all in our head”. We hear from our relatives that “It can’t be that bad”. We’re also used to people completely tuning out.
But do you know why we bring up our symptoms so much? We’re waiting to be heard! That’s right.
The best way to get someone to shut up is to listen to them.
If we keep getting our words bounced back to us like a rubber ball instead of really taken in, we will continue to have to bear this burden alone, even if you’re sitting in the same room with us.
Listening is more than being quiet and waiting for your turn to talk. If you have no idea what active listening is, don’t feel bad. I had to read a book called “The Zen of Listening” when I was in my late twenties to realize I had been doing it wrong my entire life. Before that, I was just as clueless about it as you may be right now.
To listen to understand, you must be mindful. This means being in the moment you’re in right now. You can practice this by taking moments out of your day and really noticing everything around you. Just stop, take a deep breath, and be where you are. What are you seeing, smelling, feeling, and hearing? Doing this regularly will help you get ready to be an active listener.
Here are some more tips to get you started:
If you’re a high-strung person, a slow conversation may make you anxious. It’s important to remember that this time is not about you, it’s about us.
Allow plenty of space for us to speak, pause, reflect, and speak again, instead of interrupting with questions or turning the conversation back to you.
Be a mirror
When we are finished with our story, bring together the facts and pieces of information we’ve given you to check your understanding. For example, “It sounds to me as though…” or “Is this the problem?” Asking questions like this lets us know you’re listening to us and care enough to help us work through it.
We often feel guilty after having shared a lot of information about our struggles all at once. Offer your validation by saying something like, “I appreciate you sharing this with me. I’m sure it must be difficult for you to talk about at times.” This helps a lot.
Ask probing questions
Asking questions that indicate you’d like to know more will help us feel safer talking to you about our illness. For example, “What are your thoughts about…?”
Give emotions a name
If we are struggling to talk about what’s bothering us, open up a dialogue by giving our emotions a name. Something like, “I can sense you’re feeling…”
During the conversation, nod and make gestures of understanding. You may also offer vocal encouragement such as, “Oh, I see.” “I understand.” “And then?”
This encourages us to continue speaking since we know you’re listening.
Step 3 – Avoid These Statements
- “Get well soon.”
This is the equivalent of telling a dead person, “I hope you climb out of that casket real soon”. Thanks, but we can’t do that. Chronic illness can be and often is a lifelong struggle with varying degrees of severity.
- “But you don’t look sick!”
This is the worst. It doesn’t sound like a compliment. Rather, it comes out sounding like, “You’re a complete and total faker! How do you get away with it?” There’s not a grin big enough to make this facepalm of a statement any more palatable, trust me.
- “Call me if there is anything I can do.”
There are probably a lot of things you could do for us, but we are never going to ask you to do them unless we are actively dying (in which case, we would only ask you to ‘911’ and perhaps hold our hand until the paramedics arrive).
- “It must be great to sit around and watch Netflix all day!”
The reason you enjoy relaxing on the weekend is because you have something to relax from. We may not be physically able to do the things we want to anymore, but the mental drive is still there. There’s only so much Netflix one person can watch before they start going stir crazy.
The mind and body crave more stimulation than that.
- “Sometimes I wish I had a chronic illness so I could relax.”
If you’re so stressed out that you wish you had a chronic illness just so you could take some time off, take some time off! You’re headed for burnout.
- “Just don’t think about it.”
Remember the last time you had the flu and your entire body hurt and your head felt like it was going to explode? Would that advice have worked for you?
- “Have you tried this herb/diet/natural remedy/prayer/yoga position?”
Yes, we have. Thank you. (Although, I have to admit, I still do this myself. I’m forever recommending a gluten-free diet and juicing to any and all spoonies I come in contact with, so forgive me if you’ve heard this one before.)
Step 4 – Ask These Questions Instead
- “You look good today, but how are you feeling?”
Asking this not only acknowledges that you believe we have a chronic illness even if we look ‘well’, it also shows you genuinely care to get a peek behind the mask we are forced to wear when we’re out in the world.
- “I’m going to the grocery store. Do you need anything?”
It’s not easy to ask someone to make a special trip for us. If you’re already going to the store and ask if we need something, this takes a huge burden off our shoulders.
- “Do we need to stop visiting so you can get some rest?”
We may put up a good front, but we get tired easily. If you’re the first to bring it up, we will feel less awkward about asking for some space.
- “Would you like to reschedule our plans?”
If we sound groggy or disconnected on the phone, offer us an out. We may not want to disappoint you so we’ll slog through anyway, but it will be difficult.
Asking if we’d like to reschedule saves us the embarrassment.
- “I know we were going to go out to lunch, but how about I bring something over instead?”
That’s a great idea! Bringing the party to us, so to speak, is the next best thing.
- “What symptoms are you having today?”
If you’re familiar with our illness and ask about specific symptoms, we won’t mind telling you. As a matter of fact, this is easier for us to respond to than, “How are you?”
- “Want to know what I did yesterday?”
Yes! When you talk about the regular goings-on in your life, we feel more connected with the outside world. Plus, it’s a great distraction from the pain.
Step 5 – Know When to Walk Away
Living with a chronic illness is very draining. If we are surrounded by individuals who can’t or won’t take us seriously, it only makes us feel worse. If you find you’re just not comfortable being around someone with a chronic disease, know that it’s OK to walk away.
You’re under no obligation to stick around just because we’ve known each other a while. In the long run, it will be better for both of us.
Whether you have a friend with fibromyalgia or a family member with a disease you can never remember how to pronounce, bookmark this guide and refer to it often. It will show you care and gives us a softer place to land.
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Staring woman courtesy of Flickr/Chris JL
Young man with purple hair courtesy of Flickr/Michael Taggart Photography
Girl with her back to the camera courtesy of Flickr/Keirsten Marie
Woman with umbrella courtesy of Flickr/Anna Gay Leavitt