Mixed signals

Well thank goodness January is over because I’m so ready to be done with trusting the system. I’m ready to be a disgruntled and impatient patient again.

Moving on. It’s time to pick my word for February.

Let me start with a story.

You know the game Trivia Crack? Well if you don’t, it’s basically Trivial Pursuit in the form of a smartphone app that you play against your friends. Some of the questions are really easy (What colours make up the Canadian flag?) and some of them are trickier so that all I can do is blindly guess. A couple of days ago I had the question “How many years did the Thirty Years’ War last?” and I got it wrong. I picked 33. I would love to tell you that it was just an episode of clumsy thumbs but that would be a lie. My instincts told me the answer was 30, but then I intentionally picked 33 because I figured that the game was trying to trick me.

And now it’s time for a history lesson. The Thirty Years’ War did in fact last for 30 years. Shocking, I know. You can pick your jaws up off the floor now.

I think we’re all familiar with the phrase “trust your gut.” I’ve been hearing it my whole life and for the most part following that advice has served me well. Literally speaking I cannot trust my gut with anything because my gut is somewhat useless, but my “gut feeling” or my instincts are usually right, especially when it comes to my health. Here’s the thing, though. Somewhere along the way in the last year those instincts got lost in a sea of mixed signals and I stopped trusting them.

About a year ago I had my first post-surgery follow-up appointment with my surgeon where he basically said forget my extensive medical history, forget my previous tests, he didn’t think there was any reason for me to be sick. Instead he concluded that I had a narcotic addiction and an eating disorder. Cue major inner turmoil and self-doubt! Everything ended up being straightened out but since then I have been wary of new doctors and worse, wary of my own instincts.

Last November when I was having issues around my feeding tube I went to see the family doctor on call. I explained the symptoms and the pain to her and I showed her the giant bulge in my abdomen. I told her I couldn’t sleep because I was in so much discomfort and she told me that worry can do that to us and sent me home. Later that day the balloon burst and the radiologist who replaced it told me that actually it had likely been causing an intestinal obstruction. Just worry? Obstruction? Confused patient.

In December I had another episode of really bad abdominal and lower chest pain but unrelated to my feeding tube. I felt like something was blocked or obstructed. With the advice of a GI to go to an ER if it got worse, I ended up at the ER where they listened to my symptoms, did a pelvic exam and sent me on my way. After talking to my doctors about this, consensus is that I was experiencing a loss of function in part of my intestine which would, as I had felt, result in a temporary blockage. Thanks for the pelvic exam, buddy, but perhaps next time it might be worth it to listen to my gut with a stethoscope? Sure, everything resolved on its own in time, but it would have been nice to go home not feeling like a crazy person.

And then this last week happened. Over the weekend I started having a lot of pain and discomfort around my tube. It didn’t feel like it normally does before the balloon bursts, but it definitely didn’t feel right. Kept me up Sunday night. Bothered me all day Monday. I even saw my GI on Monday but I completely brushed it off because I figured it was nothing. I completely ignored my instincts that something was wrong with my tube. Turns out that the balloon had migrated into my tract (think Santa stuck in the chimney, only my abdominal muscles are the chimney) and on Wednesday my sister took me to interventional radiology to have the tube replaced. I spent more days in pain, unable to stand up straight, than necessary just because I didn’t trust my gut that something was wrong.

I wish those stories were the only ones I have, but they’re not. There have been countless times where my instincts about my health were right, yet brushed off by doctors. Sometimes it takes only minutes for them to come around, and sometimes it takes years. As a result, there have been countless times where my instincts about my health were right, yet brushed off by me out of fear of being a hypochondriac.

So is the blame on the doctors? No. Not at all. They were doing their jobs in the best way they knew how at the time. Just as I have to do my job the best that I can. My job as a patient. My job as my advocate. Sure, there have been a lot of mixed signals, but allowing those signals to affect my trust in myself? That’s on me. Nobody forced me to doubt myself; I let that happen. I let my hypothetical gut follow the corrupt path of my literal gut!

Which brings me to my word for February: trust.

Again? Yes, again! Except this time I’m trusting myself. Trusting my instincts. I’m so weary of having to fight for my health and fight for answers, but for the month of February I won’t let myself give up. I’m going to trust in my ability to advocate for myself, and trust that it will, one day, pay off.

Trust myself to know myself? Seems doable.

And you’ll definitely hear about it if it’s not!

5 thoughts on “Mixed signals

  1. Trust your instincts. No one knows your body better than you – you live in it 24/7. Sure, you may not have a medical degree and may not be able to diagnose thing in the same scientific way that our doctors should, but you will certainly be able to diagnose for yourself when things are not right. Be strong and insist. Over time you will discover that you will have more expertise about your condition than most other doctors and the good doctors will respect you for it and take you on board as a partner in your own care instead of the doctor:patient power imbalance. It takes a lot of strength and super-assertiveness to ensure your concerns are heard (the medical establishment can be very intimidating and confusing) but it is your body, your life. Good for you for trusting your own instincts.

    • Thanks Jodie! I can totally understand why doctors get annoyed with patients using “Dr. Google” because they think that have all these rare and serious diseases when it’s just a cold or a flu. But then there’s you and me and all the other medical zebras out there who have a harder time getting a diagnosis because of the hypochondriacs. Good thing we have our instincts to fall back on 🙂

  2. PS – I want to add an OMG about your experiences and the misses. I am so sorry to hear of what you had to go through. Misses because doctors weren’t fully listening to you and your experience, even after living with this tube for a long time and therefore knowing about what it should feel like. And not listening despite all your knowledge. And when someone is in a position of relative power, such as a doctor is with a patient, it’s really hard to trust in our inner voices. May we all keep trusting our inner knowledge, especially of what we know as experts about our chronic illnesses.

  3. Dear Catherine,

    I’m new to your blog in the past few weeks and want to say hi, and thank you for speaking such truth. Your truth. Our truth. I, too, am working on trust – trusting myself, my gut, my intuition, my instincts. I have chronic fatigue (x 17 years or so) and find that it’s a work in progress. I have just worked through a layer this past week around trust and realizing how much my own believing in myself affects how much others believe in me. I understood it cognitively for a long time, but now I am growing a better sense of it in my body too. Here’s to Trust. Growing it and building on it and making room for it and making it our own! I’m with you. To February: and, To Trust.

    • Hi Veronique – thanks for stopping by and thanks for saying hi 🙂 I’m so glad that what I wrote resonated with you and I’m sending you good vibes for February as you tackle trust with yourself!

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