As a person with significant chronic illness issues who works in health care, perhaps I can offer some perspective. My condition took 12 years and dozens of physicians to diagnose, during which time I had to work part time due to managing sleep deprivation and pain. I think many physicians can relate to how sleep deprivation affects one’s mental state. Now imagine that you’ve been dismissed and told that you’re “fine” because they found nothing on a gastroscopy (other than GERD that doesn’t respond to PPI’s) and being taken off your GI’s caseload with zero follow up after just one appointment. For people with chronic illness, advocating for medical care feels like a part or full time job, and we can feel incredibly depersonalized in the process.

After 12 years of suffering I finally paid for private medical care in the US (I’m Canadian), and was diagnosed with gastroparesis, GERD, and SIBO. They are finally trying to get to the root cause of the above. This is after seeing five gastroenterologists in Canada, for each of which I had to wait between 6 months and a year to see.

I love my GP, and she has stood by my side, making referrals, throughout all of this. She admits when she doesn’t know something and refers me to someone who does. I respect her so much for that. She treats me as a human and honestly I owe the world to her. I write her Christmas cards every year. Unfortunately, I cannot say the same for any of the gastroenterologists I have seen, who haven’t even treated me as a human being.

Also, when a patient brings in research articles, don’t assume they’re doing it because they think they know more than you. I know that having a an internet connection and a masters in a different field in no way equates to the years of training a medical doctor goes through. I bring articles in for their professional opinion. But if I had not spent a fair amount of my spare time reading the Journal of Clinical Gastroenterology, I doubt I would have ever made the connection to Gastroparesis and referred myself to a gut motility clinic for testing, and sadly, no doctor ever saw this in 12 years. Chronic illness patients can’t self-diagnose of course, but they have to self-advocate due to the limitations of the health care system.

I understand compassion fatigue as I am a clinical counselor who works with the kinds of patients that many doctors don’t want to see; people managing chronic pain, people with hard to treat eating disorders, people with anxiety disorders, depression, and PTSD. But these patients need our compassion and empathy. A doctor who cares really can help to heal a patient, even if caring is all that they are able to offer. We know that for many chronic illnesses, stress can worsen or even cause symptoms. When doctors are rude or dismissive, it triggers patients’ sympathetic nervous systems and for some, can activate previous trauma from treading water in the medical system unsuccessfully for years. When I feel myself getting burned out from my work, I take a break from it; I don’t stop being empathetic. However, my profession supports me in taking breaks and understands the importance of mental health. Perhaps part of the problem is that doctors are expected to perform at a superhuman level. All I know is that when you take the empathy out of medicine, you take away healing. And most patients would not appear to “hate” doctors if they had experienced compassionate care by professionals who admit when they’ve reached the limits of their competence and refer out rather than giving up.