Why A Diagnosis Helps, Even Without A Cure

Lately I’ve been having some weird allergy symptoms. I had an anaphylactic response to something, went to an allergist, did a bunch of blood work, and then had absolutely no allergies show up on the tests. The tests only check something called IGE mediated allergies, which are by far the most common type. When I spoke with the nurse about my test results she actually said they were so low as to be “remarkable.” I asked if I could have some other type of allergy and neither the nurse nor the doctor was interested in looking into that. 

The allergist explained to me that he didn’t want to look into something called Mast Cell mediated allergies because there is no cure and even the treatments are mediocre and hard to follow consistently. At the time, my primary concern was making sure I wasn’t imminently dying from anaphylaxis, so I didn’t push the point. Also it’s hard to think of coherent arguments when you’re in the middle of a crisis. 

But a few weeks later, once the emergency had settled down, I thought about it and came up with a good response. I believe that a diagnosis is helpful to me, even without a cure available or even good treatments. Let me give an example.

Before I was diagnosed with most of my chronic conditions I would end up in the ER several times a year for chest pain, difficulty breathing, and tachycardia. The doctors would usually check me for the most pressing concerns. Unfortunately I have a line on my EKGs that is normal for me but can indicate a heart attack sometimes, so a simple EKG wasn’t enough to rule out more serious concerns. The doctors would always be half rolling their eyes at me, thinking I was some sort of hypochondriac or just trying to get attention.

What I didn’t know until years later is that I was dislocating ribs fairly regularly. When the rib that went out is overtop of where my heart is I could feel a deep chest pain but I couldn’t identify what was hurting. This also caused difficulty breathing, since taking a deep breath would cause my rib cage to expand and it would hurt. So I found myself breathing more shallowly. Between the pain and my undiagnosed (at the time) POTS my heart rate could get fairly high. 

Now that I know that I’m hypermobile and that ribs are a problem area for me I can easily triage myself when I have chest pain. The main thing I do is poke my rib heads. If poking a particular spot can duplicate the pain then it’s a pretty safe bet that it’s a rib and not a heart attack. This has saved me from countless days spent in the ER, which means saving time, money on copays, anxiety about the unknown, and exposures to other pathogens. Put simply, my life is significantly better just for knowing what is happening. There is no cure for hypermobility, there’s no brace that can keep ribs in reliably, there’s no treatments beyond pain relief and general strengthening of the muscles. And yet even so, I save a lot of grief, money, and time just for knowing. 

This is why a diagnosis is important even when there is no cure, or even good treatments. I don’t currently know all the benefits of knowing what’s causing my allergies but I’m confident that there will be benefits. If nothing else, I will have significantly less anxiety if I know what’s happening. Perhaps my doctor’s reluctance to consider this side of things is due to an empathy gap, or perhaps he simply feels responsible for treating his patients so he won’t diagnose something he can’t treat effectively. Either way, this attitude does not put the needs of the patient first, and therefore is harmful to the patient. 

Luckily for me, there are other doctors who are willing and interested in helping me figure out a diagnosis, even in the absence of cures. Keep asking for help until you get the help you need from your medical team.