As patients with chronic conditions, we’ve all heard doctors, and health professionals say ridiculous things to us, have we not? There are so many things that a doctor should never say to a patient with a chronic condition, yet still, we hear them!
They can be piercingly painful to hear, and they can do long-term damage. Not to mention ruining your patient-doctor/health professional relationship. Unfortunately, these phrases and statements can become internalised by us, and if we hear them more than once, we are more likely to start believing them to be true. No patient, chronic or otherwise, should be subjected to emotional or psychological abuse by a health professional. It’s not OK.
A lot of us with chronic conditions are sensitive souls. We have been through so much. We have endured more than we probably should, and definitely far more than we ever thought we could. Having a chronic condition takes a toll on us, whether that be physically or psychologically, or both. It can wear us down. It can make us vulnerable. It can make us sensitive to even the slightest perceived criticism, denial of our truth, or negatively-toned remark.
When we spend our whole lives trying to get people to understand our condition, it wears pretty thin. We spend so much time focusing on our condition because we have to, just in order to survive. The last bloody thing we need (excuse the language, but I feel very strongly about this) is health professionals who don’t believe us; tell us we are making things up; or providing us with no help at all.
Dear Medical or Health Professional,
Please know that these are real things that come out of the mouths of your colleagues. We hope you don’t join the ranks of professionals who say things that will be harmful or that can easily be misinterpreted by a person who is living with a chronic condition.
Because we are so sensitive; because all our hope hangs on your every word, you can understand why things might be taken the wrong way, misunderstood, misinterpreted. I hope you can also see that things you say can impact us today and in the future, just as today we may be filtering all that you say through the lens of the trauma we experienced at the hands of another of your colleagues.
Please be careful with your words. Please be explicit. Say what you mean, and mean what you say. Don’t leave things open to interpretation because I can almost guarantee you they will be taken the wrong way by us, if only by conditioning.
Sincerely, your patients.
Patients – You are not alone
If you’re a patient reading this, please remember, most doctors & health professionals are not out to hurt you. They usually don’t mean to be hurtful in what they say (OK, some do, and they need a new career). If these types of things are said to you, it’s an opportunity for you to clarify, stand up for yourself and tell them how that impacts you. That is easier said than done, I know.
When one of the below happened to me (and remember I’m a health professional as well), I burst into tears, gathered my belongings and left saying “I’m not doing this” and stormed out. I think I even slammed the door on my way out. I wasn’t willing to put up with this doctor’s blatant emotional abuse, and his ignorance about my condition. I wasn’t going to let that happen to me again.
I could have dealt with the situation better if he hadn’t triggered me so badly (things of a similar vein have been said to me before); if I wasn’t so angry and so hurt by his words.
But the reality is, he triggered me badly, and I was enraged and hurt.
If I hadn’t been in fight or flight mode, I may have been able to have a civil conversation with the man (however my gut on this one was that he actually meant what he said and no amount of discussing the matter would change his ignorantly formed opinion).
So, while some of these might trigger you, or remind you of your own experiences, we want you to know that YOU ARE NOT ALONE. We have experienced them too. (And we can get triggered, and angry and hurt together if you like!).
Here are 10 things we’ve heard that a doctor should never say to patients with a chronic condition – or if they are said, should be used with significant caution!
1. “Wow, I need to get the med students!”
Code for: This is once in a career kind of find. My patient is freakish. Everyone come & see what I found!
Probably means: What a great opportunity for them to learn about your condition; we need to educate our young doctors.
Should have: Asked the patient’s permission to bring in some medical students and explain why it’s important for them to learn from actual patient cases rather than just textbooks.
2. “I think I read something about that in a textbook when I was a med student.”
This means: I really have no idea what you’re talking about but I can visualise the page that I saw it on 15 years ago and I want you to think I know what it is. I have no idea what it says though. Oops. Should have paid more attention in med school.
Probably means: I know of it, but I don’t know much about it, to be honest.
Should have: Admitted their ignorance; gone and done some research before coming back to discuss the patient’s problems and ask the patient questions.
3. “We need to get through to you that you’re a perfectly healthy X-year-old”
This means: You’re a malingerer, a faker and I have no time for you. It’s all in your head.
Probably means: He meant exactly what he said.
Should have: Actually educated himself about Ehlers-Danlos Syndrome and read the patient file; or even better, ask the patient how their condition impacts their life.
4. “You seem to be coping very well”
This is: an assumption. This is me hoping that you’re better, so I don’t have to see you again.
Probably means: I’m impressed, you seem to be taking this in your stride. Well done to you.
Should have: Asked the patient how they were coping. Don’t assume from body language.
5. “You seem to be better today”
This is a tricky one because it can be interpreted as code for: Phew, you are better. Excellent. Mission complete. I’m off the hook.
Probably meant: I’m glad you’re starting to feel better and respond to the treatment. I bet you’re relieved to finally be feeling a touch better.
Should have: Asked the patient how they were feeling rather than assuming from looking at them that they are feeling better. People with chronic conditions wear many masks – one of them is “I’m OK”
6. “You shouldn’t be in that much pain”
Post surgery it probably means: Uhoh, what the **** did I do wrong? I hope my medical liability insurance is up to date.
Any other time: It’s a brush off because I don’t want to deal with someone with severe pain.
Probably means: Hmm, something isn’t quite right here. I don’t know why, maybe I should refer you to someone else who will.
Should have: Validated the patient’s experience and found someone more appropriate for them to see about the pain (by appropriate we mean another doctor, not a shrink).
7. “You can’t be in that much pain, here’s the name of a good therapist”
Code for: It’s all in your head. You need help, just not from me.
Probably means: Hmm, something isn’t quite right here, and while we work it out, you might need some support & help dealing with this.
Should have: Asked the patient if they would like a referral to a psychologist, after validating their experience and showing they understand the toll a chronic condition can take on someone.
8. “You just need to get used to it and get on with life”
Code for: You’re making me feel really uncomfortable about my inability to help you, and I don’t like that so, I’m going to send you on your way.
Probably mean: They mean what they say. You are going to have to get used to it, and you should try to get on with life.
Should have: Explained the physiology of chronic pain. Answered the patient’s questions. They should have said “this is something I think you are going to have to learn how to live with” and made referrals to the right therapies (PT, OT, Psychology etc) to help that happen.
9. “I don’t think any surgeon would even touch you with a 40ft pole”
Code for: You’re doomed to live with “that” forever because no doctor in their right mind would risk their surgical statistics by touching you.
Probably means:… Exactly what they say. True story. Can’t be interpreted any other way.
Should have: Had a little more tact for starters. Then explained why surgery may not be the best option for someone with a CTD. Then offered other strategies for managing the issues.
10. “This medication doesn’t do that to people”
Code for: It’s not in the statistics given out by the drug company, therefore it’s not happening. And I don’t have time to deal with it even if it is.
Probably means: Depending on the doctor, it might mean ‘I’m surprised because that’s never happened before, or at least it’s not documented if it has’. But for some doctors, they mean what they say. No if’s or buts. If it’s not documented by the drug company, it didn’t happen.
Should have: Validated the patient’s experience. Asked more questions. Asked some colleagues whether any of their patients have experienced the same side-effect. Listen to the patient. Listen to the patient. Listen to the patient.
I’m sure you’ve got more to add – should we make it 20 or 50 things next time? Let us know your “what not to say” experiences and we might use them in the future.