To the Doctors Who Tell Chronic Illness Patients, 'I Can't Help You'
Over the past few months, I have been facing what, for many, is one of the most challenging and daunting aspects of living with chronic illness: building a medical team from scratch. I had some fantastic pediatric doctors while growing up in Texas, but as an adult who now calls Los Angeles home, I must begin the process all over again.
I’ve been trying to schedule appointments with specialists who are involved with research, as I’m hoping that means they will have a natural curiosity and be interested in taking me on as an undiagnosed patient. However, as I’ve met with various doctors at university and research hospitals across LA, I’ve instead been met with a shocking and extremely disheartening response: “Sorry, I can’t help you.” I may not have a medical degree, but I can confidently say these doctors are wrong.
A few weeks ago, I met with a top-rated rheumatologist. His first comment to me was, “Wow, you’re way younger than most of my patients,” accompanied by a look of utter confusion. I proceeded to lay out my lengthy and complicated medical history for him, explaining that I have an undiagnosed autoimmune condition but am on immunosuppressants which help keep many of the symptoms at bay. As I spoke, I could tell he was getting increasingly nervous. He kept throwing out possible diagnoses, only to be disappointed when I told him I have been tested for that multiple times, to no avail.
We continued to chat for almost an hour. I could see him racking his brain for some condition or solution that would cause a lifetime of health issues to suddenly make perfect sense and provide him with a straightforward path for treating me.
But he couldn’t come up with anything, and stammered out a long apology. “I’m so, so sorry. I just don’t know what to do for you. I feel terrible,” he said, visibly upset.
“Oh… No, it’s OK,” I reassured him. “I didn’t come in here expecting you to provide with me an easy answer. I know it’s not that simple.”
He sighed. “I just feel awful. I’m usually able to help my patients, but I just don’t know what to do for you. Maybe you should see a GI doctor? I don’t know. I’m really sorry.”
After reassuring him again, I left the appointment feeling deflated and annoyed. In what universe should the patient feel the need to console the doctor? I’m the one living with long-term health issues – not him. While I may be in a place of acceptance, that doesn’t mean it’s my responsibility to help make my doctor more comfortable with my situation. I’ve already got enough stressful issues on my plate.
Still, I took his advice and made an appointment with a gastroenterologist.
The GI was a bit more collected (as in, he didn’t stammer out a series of apologies), but again, he didn’t seem to know what to do with me. He decided to schedule me for a colonoscopy and upper endoscopy to check on my GI tract, as it had been more than seven years since I last had those tests done. We decided to reconvene after he had scoped out the current status of my gut and proceed from there.
I had the procedures done a few days ago, and the result was both good and bad news. The good news: my GI tract looks almost completely healthy. The bad news? My undiagnosed illness remains undiagnosed, which means there’s no clear path ahead.
As I lay in the hospital bed post-procedure, my GI doctor threw out the possibility of doing further tests to check areas of my GI tract that were missed by the colonoscopy/endoscopy. I suppose that’s an option, but I had every inch of my GI tract thoroughly examined during the round of tests conducted seven years ago, and at that time it was 100 percent clear. If the majority of my gut is still clear, I highly doubt there’s anything to find in the rest of it. (Call it a “gut” feeling.)
My doctor was also skeptical whether it would be worth the effort to continue looking for evidence of a GI disease, but said he didn’t know what else there was for him to do if we stop testing for physical signs of illness.
I asked him if he would at least be able to manage and refill my prescription for the immunosuppressant medication I take (as my pediatric doctor in Texas is still managing it until I can find a good specialist in LA). He looked at me as if I was suddenly speaking another language. “But…how can I prescribe you this medication and have it approved by insurance if I didn’t find any evidence of illness in your GI tract, and on paper you appear totally healthy?” I wanted to scream. I only “appear” healthy because this medication keeps me in remission!
I went home after my procedure with the disappointing realization that I should find a different (and better) doctor.
Now, I’ve seen two top-rated specialists at one of the best hospitals in the country, but I’m still stuck at square one. Both of them essentially shrugged their shoulders in the belief they cannot help me. They went through their individual checklists of symptoms and diagnoses, and after crossing off all familiar possibilities, gave up.
I know there’s no clear-cut solution for my health conditions. It’s not as simple as identifying a diagnosis then laying out a treatment path. I know that. I’ve accepted that. I truly wasn’t expecting an answer or a quick fix to come from one or two appointments, or even the colonoscopy/endoscopy, but I am still deeply disappointed by their indifference towards me – their attitude of “Sorry, I can’t help you.”
You guys are wrong. You can help me.
Many doctors may think of “helping” a patient as identifying the cause of illness and offering a course of treatment that will cure them. But sometimes, especially for those of us with chronic illness, “helping” may simply mean not giving up.
Even if you’re not sure what to do for me, please don’t shrug your shoulders and shove me off on another doctor. All I ask is for you to at least be willing to spend longer than a single appointment thinking of possible tests or treatment options. For you to not give up so easily. I’m not going to stop fighting, so I ask that you don’t either.
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