Carry a Notebook and a Pen

I’ve received a number of personal comments on What a Doctor Should Not Say to a Patient on a Friday Afternoon. One of the biggest insights I had was that the patient is shell-shocked and can’t hear what the doctor is saying. So, here is some free advice.

Always carry a notebook and pen. Always. I do, because I write, and you can never tell when you need to make a note of something. I do, because I have vertigo and you can never tell when you need to take control of the moment and show yourself that you have control of something. I do, because I was trained as an engineer, and I’m accustomed to having an engineering notebook.

When I see my otoneurologist, I carry my happy purple notebook. I use the same one for my regular neurologist. Now, how great is that, that I have two neurologists! Not too many people can claim that they have two neurologists :-) I am very special.

You don’t need to have a purple notebook. You can have a sedate grownup notebook. I like mine. I won’t confuse it with anything for work.

The nice thing about my notebook is that I can use it for my notes, too. Back in 2009, when everything was confused, and I was confused, I needed notes to know what to do next. Because I was holding my head so still and not moving it from side to side or up and down to manage my oscillopsia, I was having muscle spasms. My regular neurologist figured that out. He’s the one who told me what to do for it. I wrote it down.

Your notebook is part of your support system. If you have a notebook, you can refer back to it. You can tell your doctors what they told you and when. You have your informal copy of your medical record. If you ever need a second opinion, or you need to generate a brief history of your condition, you will find this helpful. Especially if your medical record is wrong.

My medical record is, at minimum incomplete, if not wrong. Since I don’t have a real diagnosis, it’s incomplete. And, for a while, one of my otoneurologists was convinced I was on a plane when the first vertigo attack occurred. I had a devil of a time convincing him I’d been on land for over a week. He didn’t want to hear it. Doctors are human, too.

When you take out your notebook and your pen to take notes, you seem like a serious patient. When I tell my docs I have a degree in Engineering, they see me as something different than a little old lady, too. But, don’t lie! If you don’t have a technical/math/science degree, don’t tell them you do.

What you can do is pay attention. Write down the correct names of things. Ask for the correct names of things. Ask for the standard of care. If you are the patient, bring someone who can advocate for you. Especially if you are discussing a condition that will affect your judgement. Or, if you are on medication that affects your judgement.

Whatever you do, write it down. If it’s important enough that you need to see a doctor, it’s important enough that you need to write it down. That’s why you need a notebook and a pen.

Consider everything about your support system, not just the people. Use it. Write things down in your notebook.

4 thoughts on “Carry a Notebook and a Pen

  1. Andrea Chiou

    Wonderful advice!
    I have a medical handwritten journal. I used it most when I had an I diagnosed condition!
    I use it more rarely now that that is behind me (severely low vitamin D) but know it’s my sound reference that I can always find (unlike digital files at times)
    I want to add that voice memos can also come in really handy. When my dog’s neurology specialist gave me a 14 minute lo-down on all the possible reasons for his seizures, I asked her if I could record it for the other family members to hear. She said yes.
    It was easier than writing it all down.
    I am missing the proper spelling of the ailments though. I should supplement that with writing things down! Thanks for your post.

    (PS check out my FB wall for the coolest looking high quality pens my brother has just learned how to make. No idea if he wants to take commissions to make more though, but ask me if you are interested and I can find out)

    1. johanna Post author

      Andrea, recording is a great idea. Especially if medication is involved. That way you get to listen again to how many times per day, with and without food. Great catch! As you said, I do love the writing-things-down for the proper spelling. Although, you could ask the doc to spell the problem/ailment/solution out loud, too.

  2. Fiona Charles

    That’s excellent advice, Johanna. I found my notebook essential when I had a lot of medical appointments and treatments, not only to record what I heard, but also to list my symptoms and questions before each appointment. I couldn’t afford to forget anything important when facing a busy practitioner. And yes — they took my questions seriously and answered them with care. I think that was because they were all responsible professionals. but it was also because they knew that I was serious about my care, and knew how to work the system if I didn’t get answers.

  3. Pingback: Which Problem-Solving Picture Are You Seeing? | Create An Adaptable Life

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