Captain of your health (part 2)

This is the second of two posts about navigating the medical system.
If you haven’t read part 1, you can find it here: Captain of your health (part 1) Otherwise, read on!

During appointments

Phew! You got an appointment! After all that effort, the last thing you want to do now is waste it. So how do you get the most out of an appointment?

The following are all simple tips, but they can make the difference between a productive appointment, and one where you walk out with nothing. The lovely Rachel, over at The Chronic-ills of Rach, says in her post ‘Speed Dating Doctors‘,

“It has emerged over the last six years of my illness, that there is a way to behave when you go to see a specialist.  You should be able to just rock up, in whatever state you are in that day, and be helped.  But that is a pollyanna wish for a pollyanna world.”

Rachel is right. You should be able to just turn up to your doctor, and get help. But appointments with doctors hardly ever work like that. So my first, and most important tip, is…

• Get to know your doctor.
  Annoying your doctor does not make them inclined to help you. So find out what they like, and do your best to accommodate them. Even if it makes you wince inside a little bit sometimes.

e.g. ‘Doctor A’ likes it when you come to an appointment with a course of action all figured out; a list of tests and possible treatments in your hand. It doesn’t bother him when you use medical terms like ‘tachycardia’, or when you mention that you’ve read a recently published research paper on your condition.

‘Doctor B’ on the other hand, becomes annoyed at you ‘trying to call the shots’, seeing it as you crossing the line between patient and doctor. He prefers it if you come with a list of symptoms and questions, and let him decide on what tests and treatments may suit. He dislikes it when you use medical terms, preferring a non-medical description like “when my heart beats really fast”.

Note: What to do when you’re medically minded but seeing a ‘Doctor B’.
You could barge in on ‘Doctor B’ and start demanding tests and treatments, and spouting off the latest research, but I guarantee it will get you absolutely nowhere. If he was a cat, you would see all his fur stand on end. Instead, I suggest you go softly, and take the ‘My Big Fat Greek Wedding’ approach.

When Toula wants to branch out from the family café, her Dad gets upset. The mother consoles a crying Toula, promising that she will talk to the father. Toula says this won’t work. “Ma, Dad is so stubborn. What he says goes. You know, ‘The man is the head of the house…'” Her mother replies, “Let me tell you something, Toula. The man is the head, but the woman is the neck. And she can turn the head any way she wants”. Toula’s Dad ends up ‘coming up with the idea’ that she should work in her aunt’s travel agency store…without realising that it was never his idea. If you haven’t seen the movie, you can watch the way this plays out here.

Using the ‘My Big Fat Greek Wedding’ approach with your doctor.
* List your symptoms / questions, and let the doctor fully state their opinion / suggestions (don’t interrupt with your ideas)

* If you’d like to make suggestions about tests or treatments, try to phrase your suggestions in a way that lets the Doctor know that you respect them as a medical professional, and that you’re just a patient looking for answers / help. For example, instead of saying, “I want this test done,”  you could say, “I read/heard about this test for *xyz*, and I was wondering what you think about me having it done?”

* If you have any questions, try to phrase them in a way that is non-confrontational. For example, if they’re not keen on the test, instead of saying, “I want to do it anyway” (which makes them feel like you’re ignoring their medical advice, and trying to step into their shoes as doctor), you could say, “I really appreciate you trying to save me money, and not wanting to waste my time on unnecessary tests. But I’m willing to spend money on this one to get some answers about *xyz*” or “I know that the result of this test wouldn’t make much of a difference to my treatment. But it’s just a blood test, and it would really ease my mind to have a definite answer”.

So, you’ve gotten to know your doctor, and learned how to dance with them. What else can you do, to get the most out of an appointment?

• Poll your chronically ill friends.
  If you’re going to see your doctor because you have a cold, this step probably isn’t necessary. But if you’re going to discuss symptoms to do with your chronic illness, it can be helpful to reach out to your chronic illness groups first. Have any of them had these symptoms before? Are they common with this disorder? What tests did their doctors do to rule out other causes? Have they found any treatment that helped?

• Write a clear list of symptoms and/or questions to take with you.
  You may think that you’ll remember them all, but you never know when brain fog will strike. Having a list makes sure that nothing gets missed.

• Take copies of any relevant tests / reports with you.
  They often get misplaced, or never make it from your GP to your specialist, or vice versa. It saves time if you can just pull it out of your file.

• Go to your appointment with an agenda.
  What is it that you want to get out of this appointment?
  Communicate that agenda to your doctor.

• Steer the conversation.
  Don’t let the doctor get so caught up in updating your file that he forgets why you’ve really come, or runs out of time to deal with your problem.

• Take notes.
  You’ve made a list to take to the appointment with you. Now you’re making a list to take from the appointment with you. It doesn’t need to be a word-for-word copy of the appointment. Just a record of the main points: current plan of action, future treatment ideas, symptoms the doctor wants you to call her about, etc.

• Make sure you understand everything the doctor is telling you.
  Don’t just nod and smile if an explanation is going over your head, or if your brain has switched off. It’s okay to ask the doctor to explain something a different way, to draw a diagram, to write down the medical words for you to look up later, or to explain something without using medical words at all. It’s okay if you need to stop the conversation to take a breath, and give your brain time to catch up. For example…
  • I’m getting really lost. Could you explain that again, a little more slowly? And without the medical words – that’s where I got confused.
  • I’m finding it hard to understand what you mean.
    Could you draw a diagram to explain how that works?
  • I’m really tired, and I’m having trouble keeping up. Could you write down those medical terms you just said, so I can look them up again later?
  • That was a lot of information, and I feel a bit overwhelmed. Do you mind if I take ten seconds just to breathe, and then you can explain that to me again?

Note: If you struggle with saying things like that to your doctor, try reading this post…

• Get copies of any tests you have done.
  Even if your GP says the results are ‘normal’. Medical professionals sometimes disagree about what the ‘normal’ range is. Sometimes the average normal may not be your ‘normal’. But even if it is completely normal, it can be useful to have as a baseline to compare to later test results.

• Be gentle with yourself when you don’t get it right.
  There will be appointments where you accidentally get on the wrong side of the doctor, mistakenly leave your your list of questions at home, or have a brain fog attack mid-appointment and promptly forget everything the doctor has told you. Just do your best. And when your best is lousy because you’re tired, frustrated, and in pain, be kind to yourself.

I hope these tips have helped you! If you try any of them out, let me know how you go! Here’s hoping for smooth, productive appointments for everyone, so we can all get the help we need ❤

xx S.

P.S. If you’d like to read some more tips for productive appointments, pop over to Rachel’s post ‘Speed Dating Doctors: how to win doctors and influence people‘.