Being chronically ill is overwhelming to say the least. And not just in the ways one might think: struggling to ration energy, manage multiple conditions, balance symptoms, never-ending doctors’ appointments and the financial burdens. There are so many more silent battles we fight. We are referred from provider to provider, yet often receive conflicting opinions and recommendations. We are prescribed countless medications that frequently cause difficult side effects, or worsen another co-existing condition. There is a never-ending balance. A tower of teetering plates we are constantly holding, and one always falls.
Recently, after years of starvation due to multiple abdominal vascular compression syndromes, I had a PEG-J feeding tube placed. It was not an easy decision, and the process of having the tube placed was very difficult and emotionally charged. I was admitted by my out-of-state gastroimmunologist for “Failure to Thrive” (a state of decline caused by multiple impairments), inability to take in enough nutrition by mouth and malnutrition with a high risk for “refeeding” (a condition where reintroducing nutrition too quickly can be fatal) due to the lack of intervention of my local GI team. I was chronically dehydrated, had lost 12 pounds in less than 3 months, had over 7 nutritional deficiencies and was struggling with electrolyte abnormalities. From the initial tube breaking in less than 5 hours and having to be replaced the next day due to a faulty connector to the home health provider botching my discharge deliveries (it took over 8 deliveries and one week to get all my supplies correct), nothing about the process was smooth. I spent two weeks in the hospital prior to discharge and was absolutely exhausted. But, for the first time in years, I was able to finally fully manage my nutrition and hydration at home.
About two weeks after the tube was placed, I had to see a new primary care provider (PCP). Not even 5 minutes into the appointment, the doctor had fully dismantled the opinions of multiple specialists and given his “insight” after a quick review of my chart. He stated that I did not need a feeding tube and likely could have it removed as soon as I wanted. My albumin level was low-normal prior to admission for my PEG-J and therefore I did not show any signs of malnutrition. He could not understand why my specialist had even thought it was warranted. He stated repeatedly that dietitians only use albumin as a determination of nutrition status. Knowing that he was completely wrong, but unlikely to be swayed or willing to learn differently, I bit my tongue. He then went on to minimize my compression syndromes and state how they could be easily corrected by surgery. He explained one of his patients had recently had surgery for the same condition I have, and that it was a “quick fix” so he could connect me to the same surgeon. [Later, when I reached out to him for the surgeon’s name, he realized it was not the same surgery or condition after all.] As our appointment closed, and sensing a job well done, he quipped, “In good news, I don’t see anything in your chart that points to a shortened lifespan. You should be able to live a long and relatively healthy life.”
This was not the first time that I had faced this juxtaposition of care. One doctor saying one thing and the next basically stating the opposite. Too many cooks in the kitchen. Too many hands in the pot. Each new set of eyes brings a different opinion about what should or should not be investigated or treated—and how. Even when the same tests are ordered, the results or interpretations are not always consistent. For example, radiologists can review the same imaging and reach different conclusions. Surgeons can vary their approach to the same condition. Some testing is technician-dependent, which can affect results. Even the body can ebb and flow—each test only looking at a snapshot in time. And even if doctors can agree on the diagnosis, different specialists can still vary in their treatment approach for the same condition. The exhausting truth is that when providers disagree, whether it be about testing, diagnosis, interpretation or a treatment, it leaves us, the patients, being forced to choose who we trust to make the best decision. When faced with multiple opinions, who do we believe? How do we choose?
When we are forced to choose, we also have to consider the lasting impact that choice may have on our care. Every time we see a dismissive provider, their opinions and impromptu diagnoses go in our chart. Whether they are true to our experience or not, they are permanently imprinted for all to read. There is a process for removal, but it is usually lengthy and challenging. Chart notes then collect and go to the next provider we see, allowing them to make a snapshot judgement before they even meet us. If we see multiple doctors in an attempt to find one that resonates with us, we risk being labeled “doctor hopping”. That can further solidify the idea of “healthcare anxiety” or “noncompliance” being a factor in our complaints. Similarly, because insurance uses chart notes and documentation to justify or deny treatments, we need to find someone willing to “go to bat” for us. We don’t need to add worry about how things will be charted on top of everything else. I learned long ago to never trust a provider until after I read their first chart note from our appointment.
In truth, most primary care providers are not equipped to deal with complex, rare, or chronic disease. They are trained to deal with maintenance, yearly exams, common ailments, and acute conditions like a sprain or the flu. Ideally, when something falls outside that scope, they would listen to their patients, order tests and refer them to the appropriate specialists as needed. Unfortunately, more often than not, symptoms and patient complaints are instead reduced to the simplest rationale. Anxiety, depression, being overweight, sleep hygiene, diet changes, the list goes on. This oversimplification of care leads to missed root causes.
For the most part, I trust my specialists. Largely, my out-of-state subspecialty providers have been the folks that have repeatedly saved my life. They had the knowledge and tools to connect me with the care I needed to help me reach the proper diagnosis. But even with providers we trust, there may not always be a clear answer or an obvious path forward. And, it can be hard to trust your gut when it is clouded by medical trauma, but our experiences have also taught us to speak up and advocate for ourselves. We can gather information, research, ask questions and accept that we may never have every answer or even a consensus. We may not be able to control the outcome every time, but we can still have a voice in what comes next. All we can do is take the best next step. And as the saying goes, “Don’t forget to also imagine the best-case scenario.”
By Jen Jungenberg
November, 2026
Disclaimer: This article reflects the author’s personal experiences and perspectives and is not intended as medical advice. Medical conditions, treatment decisions, and outcomes vary by individual. Readers should consult qualified healthcare professionals regarding their own medical care.
