Conversations with Specialists: Part 1

Recently, I took part in a Twitter Q&A about how Chronic Illness patients interact with their doctors. It’s something I’d never really given much thought to. I realized that I’ve learned some things along this journey with Crohn’s disease that I hope to share with other patients of chronic illness.

Part 1: What I Wish my GI Had Said to me When I Was First Diagnosed

Here’s what I wish my specialist had said to me from the very beginning: “You have Crohn’s disease. This is not a death sentence but it is incurable. Your treatment options are medication, surgery, or diet changes. The pro’s and con’s of each of those options are _________, _________, and ________. Which one would you like to try first”.  This is just the bare bones of what I wish I’d heard, but you get the gist.

When I was diagnosed, in 2001, there really wasn’t a lot of information out there for patients about people living with Crohn’s disease.  There certainly wasn’t Facebook, Twitter or Instagram to connect with people who were living healthy lives with Crohn’s through diet changes or medication or having had surgery (or a combination of all 3!).  So my complaint is with the understanding that this conversation wasn’t really possible 16 years ago.

Sometimes Specialists Forget You’re an Individual

That lack of connection to others going through a similar health issue/crisis made me even more reliant on my specialists.  Which, in turn, made it all the more necessary for my doctors to have had an understanding (and GASP! a little empathy) that I was scared and likely hanging on their every word as if it were gospel.  Too often, though, I was treated like a data set in some research paper. I wasn’t an individual, I was just the next patient they had to figure out what drug to try on me next.

Self-Advocating

It is really only as I have gotten older that I’ve done more of my own research and met with other doctors, including Naturopathic doctors, that I have gained more confidence in my ability to self-advocate.  Through that, I have started to question certain practices.  For instance, doctors in the US rely heavily on prescription drugs to “fix” their patients.  But it’s really just putting a band-aid on the problem.  Prescription drugs might work for a while, but it really never gets to the root of the problem.

This is understandable for when I was first diagnosed.  The research wasn’t there to show that there might be ways to get to the root of the problem, with my specific illness, at least.  Probiotics and CBD oil, for instance, are showing a lot of promise in helping to heal autoimmune diseases.

What’s the Good News?

If you are newly diagnosed with a chronic illness, please know that there are a lot of people who can help you navigate this very confusing new world you have entered.  Those people really do want to help others out!  I hope you’ll reach out to myself or others if you have questions.  Keep in mind, everyone is different; something that works for one patient, might not work for others.

And if you are a doctor with a specialty, please know that I am writing from my own experience.  I do not believe that all doctors treat patients as data sets, nor has that always been my experience.  My hope is that this post will bring some understanding for what it’s like to be a patient.

You can leave a comment below or email me here if you have questions, or just want to chat about this post.

Part 2 will discuss what I wish my conversations with my specialist could be like now.

2 thoughts on “Conversations with Specialists: Part 1”

  1. I’ve learned that self advocating is a skill to be developed. It’s not just knowing what to say to your doctors, it’s knowing when not to say anything, because they might not be open minded.

    I totally agree that prescription drugs don’t get to the root of the problem.

    1. I completely agree, self-advocating is a skill that is developed over time. My advice to new patients, however, is that it is okay to push specialists a little bit and expect more but to be aware that some doctors are not open minded. If that’s the case, keep searching, keep pushing and possibly find another doctor. Because, how do we know until we ask! It is our health and we have the final say in what does or does not go into our bodies. Or out of, in the case of surgery! 🙂 But again, that confidence in self-advocating is still something I work on. It is hard to push back against people who not only are very smart in their specified field but portray themselves that way as well. It can be super intimidating!

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