Friday, May 27, 2011

Chronic Illness Patient Etiquette 101

Our society has this sort of fairy-tale notion of doctors... kinda Norman Rockwell. It's a good thing--we want to believe the best. We want to believe that when we get injured or sick, we're going to be met with compassionate, concerned, informed professionals who will do everything in their power to make us whole again.

The reality is a lot worse... for everyone. Most heath professionals are stressed out, dealing with a nightmare bureaucracy, outrageous hours (unless they're absolute 'rocks stars'), and the general problems that come with personalities in business (not to mention any personal life problems that may crop up). Most ERs are crowded, underfunded/understaffed for their actual peak caseload, and they have to deal with everyone including violent crimes and people looking to exploit the system.

It's really easy as a patient with a chronic illness to fall between the cracks. It's difficult to get listened to because there's no "I fixed it!" reward at the end. We all have our limits, but as patients we don't have the luxury of calling a time-out when out limits are hit. And like the above, we scream.

Unfortunately, like the psychology behind yelling "Fire!" to get attention instead of "Rape!", screaming (unless there's obvious visual trauma) rarely gets us anywhere. Here are some tips I've collected that may be able to help you with your relationship with your health professionals. Much of the time I will assume you're working with a (and use the word) doctor, but the same applies to nurses, physician assistants, phlebotomists (the folks that take your blood), etc.

1. Remember you are a supplicant... be gracious; do not demand. 

Even though it may seem like doctors are service providers, remember, they're not taught that way. MD means "Minor Deity" in the professional world. They're used to other adults looking at them with awe: "You're a doctor? How wonderful! What do you do?" They are the magicians and alchemists who raise their hands, proclaim their wisdom, and good, simple people leave their sight healed and grateful. Other health professionals, it's the same way. It's glamorous to be a health provider. They're gonna expect that. Just roll with it.

Truth is, they'd love to wave a magic wand and make us all better too. That's just not reality. Do your doctor the favor of acting as if it's possible for them to. They're caught in a professional culture that requires them to maintain a certain level of "face". Failing a patient can imply (to themselves, to others, subconsciously, whatever) that they are a failure... even if it's just natural human limits we've hit. They're people who want to believe the best in themselves and their abilities too, so it's no fun for anyone when a dead-end is hit. A good attitude can make all the difference as to how your doctor deals with the bad news themselves.

2.  Asking always goes a long way. 

If you're like me and like a lot of information, that's fine, but don't just bombard them with questions. Yeah, they're experts, but they're not Google or Wikipedia. Sometimes, they actually have to ... *gasp* ...look stuff up! That's just good doctoring. Yeah, they were taught and passed their exams. But it's better to make sure their head knowledge matches the book knowledge. Kinda like in construction: measure twice, cut once.

3. Be polite and courteous to staff, ALWAYS.

Maintaining a humble attitude can be tough if you run into staff in a bad mood or on a power trip. My experience has taught me always go the path of least resistance.

If you run into a cranky receptionist, you can try sympathizing, "Rough day?" Hopefully this will get them to take a breath and remember not to take out their bad day on you. If this gets your head bitten off (it's happened to me), apologize! "I'm sorry, I just don't want to be a burden if you're having a rough day." That may not work either, but attempting to help them save face is often a good fall-back.

If you run into a communication merry-go-round, work on the assumption that you're misunderstanding the situation. Admit confusion to the first human being you can reach in the chain. Explain what you're trying to do and ask if that's the correct way. You may be correct. You may have been right all along. Swallow that frustration. Yes, their mistakes may directly impact our quality of life. But we want them to be willing to admit their mistakes when they make them. We want them on our side. We can't come after them with a stick of righteous anger. So, like Abraham Lincoln said about Dixie, "Let 'em up easy, boys..."

3. Dress professionally for all interactions with health professionals.

In an absolute crisis (bleeding, breathing, beating (heart)) this won't matter. But if you don't fall in a top category, even if you have to schedule an afternoon appointment and take all morning to look "good", do it. It gives the impression your'e trying to maintain the status quo despite your circumstance. Looking haggard just reminds them of that guy begging for change they tried to ignore on the way into work.

4. Don't complain... 

Complaining is easy. Whining is easy. What's more difficult is the calm statement in the above picture. But that's what we've got to aim for. Be honest and state your emotions, rather than displaying them. It may be an absolute crisis for you because you're living in a daily hell, but they can't see that. In this case, I've found that humor goes a long way. One tool I love is Hyperbole and a Half's Revised Pain Scale (not safe for work language, but worth the click). Doctors see the really scary health stuff, so it can be easy for them to minimize and assume a patient is exaggerating. The H&1/2 Revised Pain Scale lets you communicate to your doctor in that fuzzy area of "my pain is not effing around" to just below "I am actively being mauled by a bear".

You may want to know what to do should the current line of treatment not work. Let your doctor know you want to be able to raise his awareness to a potential issue before it becomes a crisis, and that you want to know how to do that through the proper channels. Instead of "yeah, but what if...?", prepare your doctor with something along the lines of: "Now, to help me stay calm about all this, I'd like to know when I should come back to you if the results aren't what we hope? When should I raise my hand and ask for more help if it's before our next appointment?"

It's okay to write out questions to get the wording just right and take them to your appointment. However this can look intimidating to a doctor too, as though their on trial. You can defuse this by saying something along the lines of, "I brought a cheat sheet so I can keep focused." A lot of doctors are having to see patients in shorter appointments. Letting your doctor know you want to be organized not only looks good as a patient, but is favor you're doing for them as well.

5. Expect them to want to treat the psychological aspects of your disease, too.

We know from studies observing soldiers on the front lines that there is no such thing as becoming "battle hardened". There is going to be a psychological toll on us in dealing with a chronic illness. This can hamper our ability to heal even if the correct treatment protocol is being used. Fatigue, stress, and other unavoidable consequences of a chronic illness becomes it's own problem. It's important that psychological health be a part of our overall health plans. That may or may not mean long term. That may or may not mean medication. It's wise to include talk therapy, in my experience. (That's a place where it's okay to complain and be emotional.)

If your doctor knows that your psychological health is being addressed, then they can spend their time focusing on your physical health.

Caveat: There is, unfortunately, a pervasive culture in medicine that will try and attribute all symptoms as a psychological problem and ignore any underlying physical problems that may be going on. If you run into one of these, vote with your feet.

6. Obey your doctor's treatment plan...

Doctors have to have discipline to go to those 8am classes as 18 and 19 year olds. It's part of the pre-med course design to weed out kids who "don't really want it bad enough" to meet rigorous the demands of a real doctor. As a result, doctors think compliance is easy. After all, they're not asking you to go through med school!

If you run in to a problem adhering to your treatment protocol for whatever reason:
  1. Call your doctor. 
  2. Get an actual person on the phone.
  3. Have them make a note in your file that you've run into a compliance problem.
  4. Tell them what's happening in a non-blaming way: "When I do this, like the doctor asked, this is the undesired result."
  5. Ask what you should do.
You may run into a rare side effect with a medication that the doctor or their staff is unaware of. In this case, it may be useful to call your pharmacist. They may be able to serve as an advocate talking to your doctor's office for you in a pinch.

7. Don't over-use after-hours services.

Going to after-hour services like urgent care and the ER can look like breaking protocol if done too often. This can be a catch-22. You may have a condition that creates after-hours crisis despite best efforts. If you have a feeling you're going to need after-hours services, best raise that possibility ahead of time at an appointment. Ask your doctor what they would like you to do should something arise where you feel you need to be seen. Have your doctor assign you an urgent care facility and/or ER that's convenient to you. Let your doctor know you will use them exclusively, barring things like car accidents or a crisis while on vacation.

See if your doctor is willing to write the a letter to the urgent care/ER to explain the coordination of care. This will let your doctor know that you are pro-actively trying to be open and honest with them. Urgent care and ER instructions always include: "follow up with your regular doctor". So even if you do have this kind of reporting set up, check in with the office to let them know you had to use after hours services and why. Usually this can be done with a voice mail.

7. Beware professional narcissism.

Sometimes, you may know absolutely what's going wrong with you. Try to tell a doctor that, and suddenly that answer is impossible just because the doctor didn't think it up.... In that case, again, vote with your feet. Trying to correct this type of limited thinking will only get us labeled as "problem patients" and "non-compliant". It's always better to just be polite, say "thank you very much" and be on your way. There's the potential that this can end up looking like "doctor shopping", but that's a risk we sometimes have to take. If we're compliant in the other areas of our care, however, we can generally find a doctor who understands a good one is hard to find.

Good luck!


  1. This is absolutely awesome! Very good information, not just for chronic illness but anyone who *goes* to the doctor. I too have found the compassionate, understanding, non-threatening and organized approach is best. Excellent stuff. :)

  2. Hi

    Great info - I run a chronic migraine forum would you mind if I copy this across - under your name of course?

  3. I agree with your list, except for the "dressing professional" part. I respect people so I shower, wear clean clothes, and use my deoderant if I don't forget it, which has happened a few times. I am not wasting my energy for any extra pampering just to see my doctor for a few moments, when all of my energy is being saved for the drive too and from.

    Some days I look haggard and it's going to show regardless. I'm sick, and the doctor is likely well aware he sees sick people who aren't up to primping or who don't care because they are too sick to care. I think that's very forgivable, considering.

    Anyway, that's just my opinion on an otherwise great article with some excellent points many chronically ill people can learn from.

  4. To Anonymous,

    Good point. I didn't mean that you had to look like you're about to attend a cocktail party. I never bother with styling my hair. Neat is good enough. I usually don't bother with any make up beyond mascara and lip balm.

    But the outfit I wear to the appointment is an outfit I'd wear to a job interview. I normally schlep around the house in little better than pajamas. That may be fine for friends and family, but it can look like how I *want* to live rather than how I *have* to live.

    It's not fair, but people are judged by these things. Some doctors understand. A lot do not. Some make an unconscious decision and they don't even realize it.

    My point is to try and help folks stay safe. If safe means you need everything for the drive and screw the clothes, that's what you need to do. Lord knows the ER has seen me in some of the /strangest/ get-ups.

    But if you *can* manage it, by all means do... if nothing else, the office staff will show you more respect, in my experience.

  5. Amazing stuff...have recently started co facilitating a Chronic Illness group and was looking for Chronic Illness Etiquette when I stumbled upon this and will most def be sharing it with my group...I too have always found that a little bit of honey or sugar (positive out and inward look) goes much farther than whining or complaining) And a humble but informed patient is almost always appreciated. Thx 4 putting this all in such a professionally, pleasing and concise way...

  6. Glad to be of service! There's also an article that was a huge breakthrough for me, about how to communicate with doctors in a way that has proven very effective for me -