Chronic pain is often invisible and many people simply don’t understand what they can’t see. This misunderstanding and a general lack of education around chronic illness can fuel stigmatizing beliefs.
Even those who mean well and want to help, often say things that are actually the opposite of helpful! Let’s take a look at some phrases that you shouldn’t say to someone with chronic pain.
You Don’t Look Sick
While you may think that this could be taken as a compliment, saying we don’t look sick implies that we might be faking it, or that our illness is not severe. Chronic illness can take over every part of your life and is extremely debilitating. Just because the symptoms are often invisible to someone looking at you from an outside perspective, that doesn’t mean that we aren’t going through a great deal.
You could say:
- “You look beautiful/handsome today”
A simple compliment can go a long way, you don’t have to directly talk about your illness to say something nice.
- “How are you feeling today? Is there anything I can do?”
If you can’t tell how we are feeling just by looking at us, ask how we are instead! This can open up the conversation and provide an opening for us to ask for any help we may need.
There’s Always Someone Worse Off
While everybody has their struggles in life, it is not a competition. Pain is pain and struggles are struggles, regardless of what anyone else is going through. Everyone’s experience is valid and should not be belittled by comparing it to someone else’s.
By saying that there is someone else worse off, it sounds as though you are saying what we are going through is not severe and that we should not be ‘complaining’. Perhaps that we should just change our perspective, and get on with it.
If you have a broken leg, and someone else has two broken legs, that doesn’t make your leg any less broken. It doesn’t mean that you can just get up and start walking because somebody else ‘has it worse’. The same applies to chronic pain.
You could say:
- “Is there anything I can do to help?”
Offering your help can mean the world to someone who is struggling.
- “I’d love to learn more about what you are going through”
You might find that you've loved one signpost you to resources so you can educate yourself about chronic illness. They may be willing to talk to you about their symptoms and answer any questions you have.
I Hope You Feel Better Soon
While the sentiment is understandable, chronic pain is long-term; saying this feels like you don’t understand our condition or its severity. While chronic pain can be reduced and even eliminated, it’s often a long process.
Even if you do understand that chronic pain is long-term and you simply mean that you hope our symptoms ease, this generalized statement can often feel a little frustrating to those of us who are struggling.
You could say:
- “I hope you have a low pain/pain-free day soon”
This is much more appropriate and holds a caring, yet accurate sentiment.
- “I hope tomorrow is a better day for you”
Have You Tried…?
The end of this sentence often gets filled in with things like exercise, changing your diet, or the latest magic cure! A lot of the things people suggest are not backed by science. In the past I’ve been told that finding religion, accepting God, cleansing my home with sage, or eating only green-colored foods could ‘cure’ my fibromyalgia and arthritis; these are only a few examples!
While some of the things you may suggest do have scientifically proven results to improve chronic pain, asking us if we have tried ‘this or that can feel a little condescending. Even if there are things, we haven’t heard of that could really help, pushing them on us could make us back away from those treatments rather than consider them.
Instead:
- If you do have suggestions that could be useful, the best way to approach the subject, even with someone you feel very close to, is to ask if they are open to suggestions from you about treatments you may have read about. This gives them the opportunity to welcome your suggestions with an open mind, or to set a boundary and say no thank you.
It’s All in Your Head
While all pain does come from the brain and nervous system, saying “it’s all in your head” is a stigmatizing phrase, usually suggesting that our condition is ‘fake’. It invalidates all that we go through and can be extremely hurtful.
You could say:
- “I’d love to understand your condition, do you have any resources you would recommend?”
Once you educate yourself about chronic pain, you will be able to understand that chronic pain is completely valid and ‘real’, even if it can’t be seen
Does That Condition Really Exist?
Stigma often means that people think that chronic illnesses are ‘fake’. I’ve experienced this living with fibromyalgia, which people often think is a ‘last ditch’ diagnosis that doctors just give to someone when they can’t figure out what else is causing their pain. Yet fibromyalgia, just like any other chronic pain diagnosis, is completely real and valid.
Instead:
- If you aren’t sure about our condition and would like to know more, there are lots of resources online you can use to do some research.
- Never imply that someone’s condition is not real. By doing so, you are completely dismissing the agonizing pain and distress they may be going through every day.
It’s Mind Over Matter
Pain is created in the brain, and the brain can be retrained away from pain; those things are true. However, this change takes time. Often professional psychological therapies are a lot of hard work. It’s not as easy as just thinking away your pain, or ‘getting on with things.
Instead:
- You could read up on the science behind pain so you can better understand what someone with chronic pain is going through.
- You could ask if there’s anything practical you can do to help. As much as we might try to get on with things, often practical tasks can be difficult.
At Least You Don’t Have to Go Out to Work!
The vast majority of people who are stuck at home because of their chronic illnesses are extremely distressed by not being able to function. It’s not an active choice and it’s certainly not fun. Most will be struggling financially because they are not able to work. Minimizing this experience and implying that you are jealous of being in constant pain, is insensitive and unhelpful.
You could say:
- “It must be difficult to be out of work, is there anything I can do to help?”
Trying to be understanding and offering practical or emotional help is so much more compassionate.
If You Lose Weight, It Might Help
Being overweight can cause health issues and make chronic pain more difficult for many reasons, including having extra weight on the joints for those with osteoarthritis like myself. This is completely true. However, you don’t know why someone is overweight, and it’s never anybody’s place to judge another person.
As a fat woman, which is not something I am ashamed of, I understand the stigma that comes with being overweight. It’s always important to remember that you never know the reasons behind weight gain. My weight gain comes as a side effect of medication and is tough to fight when I find exercising painful.
It’s an ongoing journey for me and one that I am determined to keep going with. On the other hand, I’m completely confident in myself, how I look and who I am; being fat does not diminish my sense of self or my self-worth. You never need to comment on anybody’s weight, whether they are underweight or overweight because you don’t know their story.
Instead:
- Focus on giving people compliments that do not relate to their weight or even their appearance such as: “You’re such a kind person”, “You are really strong and independent” or, “You are intelligent and thoughtful”.
- If you are very close to someone and you are concerned about their weight, you could ask them if there’s anything practical you could do to help them with a healthy lifestyle. You could suggest you go out for walks together, or offer to cook them some homemade healthy meals. Be sure that you don’t push these ideas on them. Remember if they say no, you need to respect their boundaries and they don’t need to give an explanation.
Oh, I Feel So Sorry for You!
Compassion and empathy are welcome. Understanding that those of us with chronic pain is going through a lot and to express that you care, can be so helpful. But sympathy and feeling sorry for us can often feel condescending.
You could say:
- “I’m sorry you’re in pain today”
- “I’m sorry you go through so much”
- “Is there anything I could do to help reduce your pain?”
I Know Exactly How You Feel
Unless you have had chronic pain yourself, you cannot possibly know exactly how we feel. Empathizing is positive but comparing your acute pain to your chronic pain is diminishing our experience.
You could say:
- “I wish I could understand how you feel, but please know that I’m here for you.”
Oh Yeah, I Get Tired Too Sometimes
Fatigue is an all-encompassing feeling in your entire body. It can make every movement feel near impossible. It drains you of all energy. It’s completely different from feeling tired, even if you’ve had a long day. Comparing the two is depreciating the experience of fatigue.
You could say:
- “Fatigue must be tough, is there anything practical I can do to take some pressure off?”
Everyone Has Bad Days
Everyone does have their own struggles and each person’s experience in life is completely valid. However, telling someone who is struggling that ‘everyone has bad days’, sounds like you are telling them not to complain.
You could say:
- “You’re not alone, I’m here for you.”
- “There are others out there, can I help you find them?”
Connecting with other people in chronic pain can be really helpful. It allows us to feel that we are not alone, knowing that someone else truly does understand because they’ve been there too.
You’re Always Cancelling Plans
Sometimes when we’re flaring or very fatigued, it can mean that we need to cancel plans at the last moment in order to rest. This can be frustrating and upsetting. Social isolation is tough on mental health, as well as impacting our pain levels.
We’d much rather be out with friends than stay home in pain! Pointing out that we cancel plans can make us feel even more guilty and distressed.
Instead:
- Try to understand that we don’t always have control over when we can function and when we cannot.
- Know that if we are not able to be social, it doesn’t mean we don’t love you or that we don’t want to be there.
- If a loved one cancels, you could ask if they would prefer you came to their home to watch a film in your pajamas with them for example. Something like this could really mean the world to them.
Are You Better Yet?
Chronic pain is long-term, it doesn’t just go away one day. The road to recovery can be long and for some not possible. Asking if we’re better yet just reminds us that we’re not and that we might not be for a long time.
You could say:
- “Is there anything I can do to help you with your recovery?”
Practical help is a great way to be there for your loved one.
My Friend/Family Member/ That Famous Person Has Your Illness and They’re Doing Amazing!
Comparing us to other people only makes us feel that we are not progressing fast enough or not coping well enough. It doesn’t motivate us, and instead can increase our stress, actually contributing to our pain.
You could say:
- “Isn’t it wonderful that ‘this famous person’ is raising awareness of chronic pain?”
- “Is there any way I can help you to cope better with your symptoms?”
- “Would you like me to put you in touch with my friend/family member who shares your diagnosis?”
Is your illness because of your…?
Speculating about the cause of our illness can be really hurtful. Chronic pain is complex and is caused by a variety of factors depending on the diagnosis. Asking someone if their chronic illness is because of their weight or because they don’t exercise enough, for example, is just pointing out things that you might see as faults. This only reduces self-esteem rather than builds it up.
Instead:
- Remember that you do not need to understand what the cause of our chronic illness is to respect us and our experience.
If you’re ever in doubt, find resources online to educate yourself about chronic pain. Remember that words can have a big impact on others. Be responsible with how you treat and speak to others.
Precision Pain Care and Rehabilitation has two convenient locations in Richmond Hill – Queens and New Hyde Park – Long Island. Call the Queens office at (718) 215-1888, or (516) 419-4480 for the Long Island office, to arrange an appointment with our Interventional Pain Management Specialist, Dr. Jeffrey Chacko.
