It happens pretty much every time: I leave my doctor’s office, get in the car and go, “Oh man! I didn’t tell the doctor about…” My husband always asks why I didn’t say something. Most of the time, I just shrug. I don’t always know why I don’t bring something up. After spending some time thinking about it, here’s why I think patients don’t tell their doctors everything:
1. We had a bad experience with a previous doctor. In different illness support groups I’m part of, this is by far the most common reason I’ve seen for why patients don’t tell their doctor everything. If your patient has multiple chronic conditions, they’ve probably been to a lot of doctors over the years. That means their number of bad experiences is going to be higher than a typical patient. If any of their conditions are uncommon or legitimately rare, their number of bad experiences is going to be higher than you think. We’ve learned not to share too much. We’ve learned to carefully curate what we do share. It’s a matter of survival when you’re navigating the medical world as a complicated patient.
2. We forgot. Patients with multiple chronic conditions are managing a lot of different things. We are tracking and storing an incredible amount of health-related information in our heads. It is very, very easy to forget something. Even if we write notes before an appointment, we probably won’t remember all of the details that went along with the note.
3. We don’t want to overwhelm you. A lot of “professional patients” are aware that followup appointments are only 15 minutes. We don’t want to take up too much time. If you’re running late, we may even try to help by making our appointment one of your “easy” ones. After all, we’re pros with this whole appointment thing!
4. We’re trying to be a “good patient”. We want the affirmation that we’re doing a good job, and we want our doctors to feel like they’re doing a good job. We don’t want to be the patient who always has this wrong or that wrong or needs to adjust another medication. This is commonly known about typical patients, but it is especially true for the patient with a complicated health profile. We’ve been through the ringer with trying to get a diagnosis and treatment. We’ve seen more than our fair share of bad doctors. When we finally find an awesome doctor, we want to return the favor by being a great patient. We’re constantly worried that we’re going to annoy the good doctor. After all, other doctors were annoyed with us in the past.
5. We’re exhausted and just want you to tell us everything is fine. I went to my primary doc after I slipped down half a flight of stairs. He checked my shoulder and said it was probably just a mild strain. I didn’t tell him that I had more significant pain in areas of my shoulder that he hadn’t palpated (not where you would think to check given the way I described the fall). Why didn’t I say anything? Because I wanted everything to be okay. I knew that if I told him I had more pain in this area here and that area there, I might get sent off for X-rays. And I just didn’t feel like dealing with more X-rays. We’d hit our out of pocket maximum, so it wasn’t even a cost issue. I was just worn out from appointments, lab work, and diagnostic tests. I knew I needed to check in with my doctor after slipping down the steps. So I did. He told me what I wanted to hear, so I happily went on my way.
6. We’re confused. A lot of times for patients with MCC, what we’re feeling doesn’t fit the usual assessment tools. The pain scale is a perfect example:
Look at what the 4-6 range says, “May interfere with your ability to do certain normal activities like reading, watching TV, having a phone conversation, etc”. People in my rheumatoid arthritis support group had the best time laughing at that. “Level 4-6 pain? Oh, you mean Monday, Tuesday, Wednesday…” For those of us who live with chronic pain, 4-6 is just an average day. We will be gardening, vacuuming, doing laundry, and roughhousing with our kids on a level 4-6 day. Yes, it really does hurt at that level. We just know if we always limit our activities when we are hurting, we’ll never do anything. But difficulty reading, watching TV, and messing around on the phone? Even on a bad pain day, it’s not hard to do those things. It’s how we keep our minds off of the pain. So when you ask us to rate our pain on a scale that looks like this… we aren’t always sure how to answer.
As much as we know we should tell our doctor everything, that just doesn’t happen most of the time. In fact, it’s a running joke among people with chronic conditions: “Trust me, you don’t want to hear all of my symptoms. We’ll be here all day!” So we aren’t going to tell you everything everything. We start off having to pick and choose what we’re going to tell you, anyway, and a lot of times things just get left out.