10 Common Things Said to People with Chronic Pain & Illness and What to Say Instead

Feb 25

Chronic pain is an isolating, disheartening experience that often stumps mental health professionals and leaves clients confronting the complexity of their grief alone. People experiencing chronic pain have an increase of depression, anxiety, and suicidal ideation as they navigate what often feels like a dark tunnel with no hope for light. As a therapist and person with chronic pain and illness, I understand how difficult it is to ask for help, communicate needs, and hear people say things that are dismissive and upsetting, causing further distress and hopelessness.

I have witnessed many process painful things they have heard from friends, family members, doctors, and health professionals that further alienate them and perpetuate anguish. Chronic pain and illness is often accompanied by trauma, adding complexity to the hardships these individuals and/or relational systems are already confronting. One of the things that makes knowing how to connect with those with chronic pain difficult, is that everyone has experienced some kind of physical pain or ailment, so people tend to believe that they can connect with someone experiencing pain they think is comparable to their own experience. However, chronic pain and illness is completely different than having experienced an acute injury, even if symptoms last several months. Chronic pain and illness is an all-encompassing, often life-long struggle in which people suffer daily pain that often interferes with activities of daily living. These activities may include, driving, walking, sitting for long periods, exercising, working, spending time with friends and family, sex and intimacy, enjoyment of hobbies, childcare, and ability to take care of the self.

I have compiled a list of the most commonly upsetting/problematic things people say to those struggling with chronic pain and illness, and alternative suggestions.

My hope is that these will prompt families, friends, caregivers, and health professionals to think and feel more deeply with those experiencing chronic pain and illness. Afterall, we all reach for connection hoping to be seen, heard, and felt. Sometimes, meeting one another’s needs is all in a shift in language, and the ability to open ourselves to understanding what is underneath the surface of someone’s emotion, behavior, or request/demand.

Below, I use skills from Emotionally-Focused Therapy (EFT), an attachment-based therapy to assist you in building language for connecting more deeply. EFT offers us a wonderful lens for assisting people in bypassing surface-level communication and deepening our ability to meet one another’s needs by learning to communicate primary emotions. To learn more about primary emotions and EFT you can visit https://iceeft.com/what-is-eft/

If you experience chronic pain and illness, sending this to someone you know may be a helpful way to ask for support. If you know someone with chronic pain and illness, I hope these will help you connect with the person in your life experiencing pain and illness, in more fulfilling ways.

While these tips below are about what to say, sometimes words are hard to find or are even unhelpful. The power of presence is often most supportive. As you read through these problematic statements and their alternatives, consider how you might exercise presence with the person you are supporting.

1) “Have you tried…”

This one might be the most famously feared by those experiencing chronic pain and illness. I once saw a T-shirt that said, “If you are going to ask me if I’ve tried yoga, meditating, ibuprofen, or drinking water, leave now!” Genius. Not only does this put into question the real pain being experienced, but it leaves the person feeling dismissed, misheard, invalidated, and disempowered. Meditation, water, etc., are all important, evidenced-based tools for alleviating pain. With this said, it is not your place to question, suggest, or give unsolicited advice to the person experiencing pain, and it also does not mean it has or will work for them.

Here are some alternatives that feel more empowering:

“I am curious about what you have tried already that feels helpful or unhelpful to you.”

“Is there anything you would like to do that would feel supportive for you at this time?”

“I feel unsure what to say. Can I just be here with you?”

2) “The same thing happens/happened to me.”

When a person with chronic pain and illness is injured, experiencing fatigue, or is in pain in general, it is NOT the same as a person without chronic conditions experiencing it (someone give me a megaphone!)! There is a different emotional impact, different presentation, and different etiology. The best thing you can do is de-center your own experience and listen to the experience of the person suffering with the condition(s).

Here are some alternatives:

“When I hear you say how much you are hurting, it really hits me.”

“Your pain is so hard to understand. Can you tell me more about your pain so I can try to understand it as much as possible?”

“While I experience/experienced pain of my own, I know your experience is so different. I want to connect with you about this in any way I can, even though its hard.”

3) “I have a friend who this happened to…”

This is an attempt at empathy, but a failed one. The goal here is to assist the person with chronic pain in hearing and connecting with other experiences. However, much of the time this “friend” has had a very different history and trajectory from the person experiencing chronic pain and illness. Most of my clients, and myself included, are under the age of 50 – the age in which most chronic pain is recognized by the public. Many of the comparisons fellow spoonies* endure are of older folks who do not have the experience of living with chronic pain and illness in their 20’s and 30’s where the root cause of the pain and illness is not age, but something much more complex. When a person with chronic pain and illness opens up to you about their pain, they are often looking to feel seen and heard. Placing the attention on “the friend this happened to” pulls the focus away and keeps people feeling afraid to share.

Alternatives ways of connecting through words:

“I know a few people who have been through similar experiences, but I know it might be different from yours. Would you be open to hearing about these experiences? I know they are not the same, but I wonder if it could still feel supportive. It is okay if not. I am here for you.”

“I have heard about how hard it is when people go through this. I am here to listen.”

*Spoonie is a term used by some people who have chronic illness to describe themselves. “Spoon Theory” is used to communicate how much energy a “spoonie” has on a given day. For example, I have 3 spoons today; going to the grocery store, taking the dogs to the park, and writing. I do not have enough spoons left to also see friends after work.”

4) “Is it really that bad?”

Yes Karen, it really is that bad! Saying this is dismissive and is more about the comfort of the person asking than the comfort of the person needing the support.

Alternatives:

“It is so hard to know that you are in this much pain.”

“I believe you. It is just so hard to imagine the pain you are in.”

5) “But you looked fine last time I saw you!”

There is some awesome language circulating the internet about this very statement. That language goes something like, “I am not faking being unwell, I am faking being well”. For those living with chronic pain, our lives cannot stop. When we can, we muster the energy within ourselves to go out to that dinner, see friends and family, exercise, and travel. Even when a person is smiling, laughing, and seems to “function” in the ways society demands, it does not mean the pain is not happening. I guarantee you, it is. Sure, it may be less than the time they needed to spend in bed, but the pain is still ever present.

Alternatives:

“I must really not understand how much pain you are in all the time. When I see you smiling, I forget you could still be in pain despite it all.”

“Its so hard to hear your pain fluctuates like that. I love when you are able to spend time with us, even when you are in pain. Is there something I can do to help support you next time we ____?”

6) “You are so resilient.”

Resilience is one of those weird words that has two sides to it. On one end, it speaks to an individual’s strength, which is lovely in most situations. On the other end of the word “resilience” is the hard truth that a person only has to be resilient because of oppressive external factors. Rather than attempt to change the narrative or challenge greater systemic discourses that cause the pain experienced, it puts the onus on the person who had to endure it.

Instead of “you are so resilient” here are a few things you can say or put into your own words:

“You have been through so much”

“It must be so difficult to endure all that you have”

“it makes sense that you feel (x, y, z), I am here”

7) “I understand.”

Unless you actually understand and have been through a shared experience, you don’t. People often confuse this with empathy. Empathy is not saying “I understand” when you have no basis for really knowing what it is like that the person is experiencing. The person you say this to may feel misunderstood and therefore more isolated and anxious.

Here are a couple alternatives that promote empathy and connection.

start by reflecting what the person said to you. For example:

Person A: “I feel so sad and angry that this is happening to me”

Person B: “I hear how sad and angry you are. It makes sense that you feel this way.”

“Sadness and anger are totally valid ways to feel right now”

If you do want to share a personal experience of sadness and anger, ask for consent first!

For example

“I hear you. I would love to share with you a time when I felt sad and angry. Would that be okay with you? It may not be the same situation, but I really can connect with your feelings right now.”

8) “We all have something.”

Similar to some of the statements above, this one is invalidating and dismissive, despite being an attempt at empathy, this is more of a sympathetic response that misses the opportunity for connection.

Here are some alternatives:

“I know so many people feel pain, and I hear that yours is unique to your experience.”

“There is so much pain in the world. I wish you did not have to go through this, and I know you have no choice.”

“My pain is different, but I would like to share it with you if you have capacity. Maybe we will be able to connect about it.”

9) “You’re too young to be experiencing x, y, z.”

If only this were true!

Alternatives:

“It is so difficult to know you are experiencing this now.”

“I am so sorry to hear this is what you are going through.”

10) “I know you can do this!” or “You got this!”

A lot of people experience a version of this from those they know. I have too. There is no “we” here, or an offering of support. It leaves the person in pain feeling isolated, shrugged-off, and left not getting their need met – a need that often comes from a great desire to connect and feel felt by those around them. This comment does the opposite. If taking a hard test or playing sports, sure! Not for someone living with debilitating pain and illness.

Alternative:

Try speaking to the need the person has – to feel connected with. Here are a few options that you can use or put into your own words.

“This is so difficult. I cannot imagine your pain, but I am with you.”

“I would love to support you and am not sure how or what to say – what would be helpful for you in this moment?”

*** sometimes the person will not know what is most helpful in the moment. If they do not know, you can say, “It is okay to not know. That makes sense. I am here for you, even if that just means texting you to check in.”

When in doubt, ask QUESTIONS and listen!

Many of these are examples of people exercising sympathy more than empathy (we want empathy!). Here is a link to an excellent resource explaining the difference between the two: https://www.youtube.com/watch?v=KZBTYViDPlQ