The Advice I’d Give Chronic Illness Patients After Shadowing a Gastroenterologist

I was reading Dr. Stefano Guandalini’s “Textbook of Pediatric Gastroenterology and Nutrition” when I saw a woman with a stethoscope walking anxiously towards my desk. My hands reached for my notebook, hoping she would rescue me from the dullness of the book.

She motioned me to come and I realized this would be my first time shadowing a doctor at Children’s National Medical Center.

Shadowing reminded me that the diagnosis is the hardest part. Seeing parents and kids have to grapple with an inflammatory bowel disease (IBD) diagnosis was painful to watch, but was a reminder of how hard my own diagnosis had been.

I can just see it on their faces; they looked completely dumbfounded when the colonoscopy results arrived. Some verbally denied the diagnosis, while others stayed silent. Clearly, most did not know how to react and that’s completely normal. Confusion is just a part of the process that every patient goes through. Same goes for the patients’ family since many relatives find it difficult to know that their relative is chronically ill. The grieving process for patients and their families will be different, as they have vastly different perspectives. And that’s OK too. The main thing is to let yourself grieve however you see fit, as grief is a nonlinear and lengthy process.

Every patient I encountered processed his/her diagnosis differently because there is never a “correct” way to feel. How you feel will depend on a variety of factors. For example, if you were not expecting the diagnosis, you might be met with more shock than a patient who was expecting it. From the complex dietary changes to the long list of medications, you may start to realize that, as long as there is no cure, life will never be the same.

Shadowing also reminded me that navigating health insurance is a challenge. Health insurance can be both a road block and a blessing. Insurance companies can take up to 10 days to approve a lab test. I remember watching doctors spend hours on the phone with insurance, clarifying every number on the bill. Those phone calls often got heated and would last for hours.

Hence, do not be surprised if you find yourself doing that too because a lot of people struggle with health insurance. Sure, this process can have a grave impact on patient health, but you will have to learn how to deal with insurance over time. You will eventually get better at handling insurance, but it takes practice.

When interacting with health insurance companies or medical professionals, do not be afraid to speak up. Major hospitals, including The Cleveland Clinic, state that patients (and their families) have the right to participate in their treatment. I definitely noticed that patient families who took more initiative in their child’s care navigate the journey easier because doctors knew what the families wanted.

In any healthcare setting, tell the whole truth, even when it’s embarrassing. The worst that could happen is the doctor now knows the full picture. In essence, it only benefits you and your entire healthcare team that you be completely honest. In the end, ignored symptoms can transform into unforeseen health complications.

Shadowing also reminded me that patient-doctor communication is crucial.  If you have issues communicating with your doctor, address it right away. It is better to discuss it sooner so you can benefit from this relationship. Do try not be confrontational in your discussion because an aggressive attitude will not change anything. In fact, it could only make you more likely to miscommunicate. Consider starting the conversation by addressing the problem directly, saying something along the lines of, “Is there a way we can communicate better? I feel like we are misunderstanding each other.” The key is to promptly discuss any issues — patiently — with your doctor.

Pro tip: When you send an email, you risk miscommunication. No one can read facial expressions or body language on the computer screen. Hence, face-to-face conversations would be best for this context.

If you find that you are unable to self-advocate for any reason, a family member or friend can do that for you.

What points of advice would you add? Let us know in the comments below.

A version of this article was previously published at Collin’s IBD Chronicles.