Do I know myself better than my medical team?
Self-advocacy is a funny word. It's something I've always tried to encourage in my writing but lately, I'm struggling with a different kind of dilemma: Is self-advocacy working with your doctors and making sure your voice is heard... or is it sometimes feeling that actually I might know better than them?
I'm starting to feel as if my doctors are only interested in the numbers in front of them — but my life is far from a number. Let me expand. Back in July, I went to my doctor as I was struggling with my symptoms — we all know that gut feeling of 'something just isn't right' but apparently my doctor wasn’t interested in my intuition. I was dismissed and unheard. My perfect bloods led them to tell me to "relax" and "perhaps go on a spa day!" Apparently, it was impossible that I could be unwell with perfect blood results. To say I was frustrated was an understatement. Surely self-advocacy is working together with the patient? Not just invalidating their symptoms? Don’t my views matter?
"Do we go off the numbers or the feelings?"
That experience led me to write about whether true remission existed. Perhaps I was in remission and my body wasn’t getting the memo. I struggled with the concept of ‘remission.’ Do we go off the numbers or the feelings? The science or the daily life of the patient? You all share your thoughts and it seems that for many, it has to be a combination of these things.
It’s now March and, what do you know, my bloods are still perfect but the MRI I begged for in July has now shown a small area of activity. Weird thing? After that blip in July, I feel GREAT and, given the wait time we have for MRIs in the UK, it felt kind of pointless going to it by the time it rolled around.
I’m left uncertain as to whether the small area is my colon getting back to normal after feeling unwell in July or perhaps something just beginning. And how do we explain my blood results?
"I still get a sense that nobody is really listening to me."
But, my deductions don’t really matter one bit. Now, the doctors have seen the results. They leapt into action, leaving me a voicemail to tell me that I’d be starting a new medication. Yes, I know (before you leap to the comment section) that inflammation has to be controlled but at the same time, I still get a sense that nobody is really listening to me. No one listened when I felt sick and no one listened now that I feel well.
I appreciate that not everyone’s body is perfectly in tune, but there’s an urge to say I told you so when I next see my medical team. I write daily about Crohn’s disease and always urge a proactive approach — but where has this gotten me? I had pushed for the MRI and now this essentially means I’m looking at taking more medication when physically I just don’t feel sick. I have so many questions and one is the most prominent: if you can’t tell when I’m sick or when I’m well, how will you know if this medication works?
I’d never advocate not following your doctor’s orders but this incident has left me feeling an all-time low in terms of the trust I have in my doctors. I want to be listened to, not dismissed. I wanted to be asked questions, not instructed. And most importantly, I desperately want to feel as if my doctor and I are in this together, because otherwise I can’t help but feel incredibly alone.
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