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Uncertainty: Am I Dying Or Am I A Fool?

Uncertainty

Being the doctor is always better than being the patient.

And being an Emergency Physician has apparently spoiled me.

No, I certainly don’t love every aspect of my job, and the bureaucracy and competing yet incompatible demands make me want to pull my hair out and scream…

But it’s still better than the uncertainty of being the patient. 

Medical Uncertainty

When patients visit my ED, I do my best to provide them with as much information as possible as kindly and quickly as possible. Most of the time the news is good. Sometimes the news is bad. Occasionally the news is indeterminate and requires non-emergent follow-up.

I’ve always felt the most empathy for the people in this last group because they have to keep waiting. I’ve told them that they might have cancer, or they might have nothing wrong. Good luck with that! Have a nice day 🙂

I stress the importance of following up with their primary care physician (PCP) or specialist and assure them that, for the time being, they are stable.

The burden is now on them.

Me Too!

Except now the burden’s on me too.

I’ve recently had some concerning symptoms that I’m sure are nothing important… except they might be.

So after many years of good health, I finally found a PCP to address my concerns. She felt that I was stable and not at high risk for badness, so she recommended watchful waiting worrying.

Another month passed, and the symptoms worsened. NOW she’s ready to do some testing.

On one hand, this made me feel validated, but on the other hand it made me feel terrified. Instead of being in my worry bubble all alone and pretty sure I’m overreacting, having someone else share my concern made me wonder if I was right to worry all along.

Whatever. Now that she’s on board, let’s get some answers!

Hours Vs Eternity

Not so fast. The outpatient medical world is maddeningly slow compared to the ED.

Instead of just walking in to the ED, it took a month to get an appointment with my PCP, then another month before she did anything.

Labs that take an hour in the ED take two to three days in the real world. Imaging that takes two to three hours in the ED can take weeks as an outpatient. (Three hours on the phone clarifying the order, then finding a facility that offers this testing and takes my insurance, then calling six of them to see which one has the soonest appointment, which is still a few days out, then waiting another day for the results. WTF! Not to mention dealing with medical assistants who treat me like I’m an idiot when it’s clear that they don’t know what they’re talking about.)

Plus, most PCPs order tests sequentially rather than in series, so you have to wait for the results of the first one before starting the process all over for the second one, which is the one I wanted in the first place. It is so very difficult to bite my tongue and try to let my doctor be the doctor. It’s like trying not to lead when my husband and I dance — I know I should back off, but it’s sooooo hard!

I know that my PCP is trying to save money and utilize resources responsibly, and I appreciate that, but what she ordered first is something I thought was completely unnecessary and just cost extra and dragged out the uncertainty. Plus, it made me worry about something that hadn’t even been on my radar previously. Who doesn’t love more things to worry about?

The Internal Dust Devil

In the outpatient world, there’s too much time to think, to wonder What if?

Should I be worried? Or should I believe everything’s fine until I have evidence otherwise?

But if I felt fine, then I wouldn’t be worried in the first place.

As I think through each scary possibility, I can list five reasons why it wouldn’t make sense for me to have it. I can almost convince myself that I’m fine and should just wait a while longer.

But my symptoms persist.

So I’ll keep jumping through hoops to try to get the tests.

If they’re negative, then great!  But I’ll have spent more than a mortgage payment for the knowledge and have received a few years’ worth of extra radiation.

I’ll feel like a fool, though I’ll still be frustrated and wonder when the pain will end. Will it ever go away?

Or should I think about the worst case scenario? Should I take advantage of these (possibly) last few days or weeks of ignorant bliss? Should I plan how to quit my job and spend my last few months or years? This seems ridiculous, but what if?

We have a wonderful life, but if I knew that my time were severely limited I would do a few things differently. I gave up soda and meat during the last year. Should I keep eating healthily or wholeheartedly embrace gluttony? Do I want to travel more or less? Will I regret not making the most of this time?

How do you approach times of uncertainty? Do you proceed as if all is well or prepare for the worst? Let me know in the comments below.

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Comments 9

  1. I’m guessing this is hard on you because you know so much more than we do about our ailments and what they might mean. I try to take a relaxed approach in times of uncertainty – but I make sure I have take care of anything others might miss. I hope you will get answers soon!

  2. Oh, Julie! I’m so sorry you’re going through this. It’s the worst to wait, wonder and ponder the possibilities and the options. My thoughts and prayers are with you. I hope you get the very best news and I hope you get it soon. 🙂 You know where to find me if you ever want to chat…

    I’ve recently had a similar experience. The waiting is torturous. And the whole thing has been life-changing, to say the least.

  3. Sorry you’re going through this, Julie. Not fun. Hopefully you’ll find an answer soon. What scares me, however, is that you’re a doctor and you’re having problems navigating through our healthcare system. What chance does a layperson have? I assume I have good health insurance. But I won’t really know until something goes wrong. Best of luck, Julie. We’re pulling for you. Keep us posted.

  4. Thanks for writing about this and being so open with what’s going on in your life. I really appreciate this post since it shows that even though you are a doctor and have a lot of knowledge, you still experience the anxiety that laypeople do. I’m sorry to hear that you’re going through this tough time. As for health uncertainty, I can relate. The only thing that I’ve found that helps and I try to do is think it through and write down what the problems are and what the possible solutions are. I’m not as good at this as I would like, but when I make myself do it, it helps.

  5. Uncertainty is so hard for my personality type. Even if something is bad, I like to know about it because at least I know what my options are and how to react.

    Playing the waiting game is something I don’t enjoy and I certainly don’t do very well. I hope you find the answers you’re looking for very soon, and I sincerely hope that it’s positive news!

  6. This sounds so scary for you. The uncertainty of waiting is the worst. I am glad that you are persisting with the tests. If the best outcome happens (it’s nothing), it does not mean that you are a fool. Rather, it means that you have responded to the symptoms appropriately by having tests to rule things out, and everything worked out for the best. And if there is an issue, then you have addressed it as early as possible which likely means a better prognosis.

    I think many of us experience something similar in our lives. For me, it was an occasional stabbing abdominal pain that started nearly 4 years ago. I have had various tests that have ruled out one thing after another, but I still don’t know what causes the (now more frequent and intense) attacks. However, I’m healthy in every other way, and my doctor doesn’t seem concerned. So, I’m living with it.

  7. I hope by now you have some answers. We’re sending positive vibes your way.

    For anyone this waiting has to be excruciating. For someone like you trained in ER I can’t even imagine. It seems outside of the ER doctors have protocols to go through. Sometimes they are totally unwarranted but that’s how they’re taught to treat. Rule in/rule out.

  8. Sorry to hear it. As Tom Petty says, “the waiting is the hardest part.” I hope all is well, and you are given a clean bill of health.

    Best,
    -PoF
    p.s. I gave up soda (and caffeine) a few weeks ago. I don’t miss them much.

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