Navigating chronic illness can be extremely frustrating, time-consuming, and generally a big PIA. 

Finding a doctor that is a good fit, waiting for the appointment, the previsit anxiety. Afterward, fighting with insurance and the pharmacy over medication coverage, and then playing go-between trying to get the prior authorizations approved. Paying for ALL of the copays after you hit your high deductible and then adding in all the other out-of-pocket costs.

The list is endless and a huge headache.

Getting care when you are suffering should be easy. It should be empathetic or at a minimum respectful.  It should be a healing experience.

One of my missions in life is to help you better communicate with your healthcare team.

Let's dive into the 5 secrets that your immunologist may not quite have the time to talk to you about during your office visit.

This is Part 1 of this series.

1. What is an immunologist? 

First things first, there are immunology physicians and immunology research scientists.

Immunology research scientists study the immune system in the lab. They are at the cutting edge of science and help inform future directions that we may consider in clinical research. One important thing to understand though is that some research may be promising in the test tube or in animal models but does not cause the same effect in humans.

This is one reason I urge folks to pump the breaks when we see a study that has not been performed in humans yet. More on this in a future blog! 

An immunology physician is someone who has graduated from undergraduate college and medical school. Then, they complete training either in internal medicine and/or pediatrics, which takes 3-4 years. Following general training, they spent an additional 2-3 years learning how to treat people with misbehaving immune systems.

During this intense 9-13 years, they are spending around 60-80 hours per week studying and caring for patients. 

Physician immunologists can complete 2 different types of training programs. One is an allergy-immunology program. This is the training I did. This training specifically helps future allergist-immunologists learn how to take care of patients with an overactive immune system that's primarily viewing many different things in our environment as dangerous. We learn about environmental allergies and food allergies but we also learn about certain blood cells that can become problematic. These cells we typically call allergy cells including mast cells, eosinophils, and basophils.

We also take care of patients who have underactive immune systems or immune deficiency. So these patients may have frequent infections, or have trouble fighting off infections that make them more susceptible to many times sinus infections, pneumonia, and skin infections. 

Did you know that immune deficiencies actually increase the risk of autoimmune conditions as well? Pretty rude if you ask me.

We also take care of chronic hives and swelling, also known as chronic urticaria and angioedema, which, interestingly, is an autoimmune phenomenon more often than an allergy phenomenon.

The other training pathway is a rheumatology/immunology program. Again this is an additional 2-3 years after general internal medicine and/or pediatrics training. Rheumatologist have more training in overactive immune systems that have recognized our bodies as dangerous and a focus on conditions that can affect the joints and muscles.

These physicians are very commonly going to take care of patients with rheumatoid arthritis, Sjogren's syndrome, lupus, gout, and related conditions.

So if you think about an immunologist, it can be an allergist or rheumatologist, we're looking at the same immune system but from different sides of the coin.

Although I have made a pretty clear distinction here, in real life, there are some of us that overlap a bit in who we see in the office. It is really helpful to be upfront with what you are concerned about when you call to schedule your appointment. I always feel terrible when someone has waited weeks (months) for an appointment only to find out they are not in the right office.

Digging into what our training looks like a bit more...

I distinctly remember starting my fellowship. It was July 2014. I was fresh out of my Internal Medicine & Pediatrics Residency, where I had just spent the last 4 years learning how to care for both adults and children. The first few chapters of our Abbas Immunology textbook were pretty easy to understand. 

Abbas is the basic science textbook for clinical immunologists. It gets into the nitty-gritty about how our immune system is functioning: how cells are talking with one another, how immune system memory is created, and then how things can go wrong such as why our body may see the environment or our own cells as dangerous. 

We had been told by our senior fellow colleagues and mentors that we would be responsible for knowing this book cover to cover for our board certification exam in 2 years. 

My co-fellow, Maggie, and I were feeling pretty confident as we were making our way teaching each other through these first few chapters, and I was like, Oh, I've got this. This is super exciting. I really love this science.

What we didn't realize is that it was about to get real...

So we're about a month in we do a chapter a week, and it was like the proverbial poop hit the fan.

Chapter four. It got really complicated really quickly and I was thinking "goodness, I am not in Kansas anymore. This is really tough."

And so there is this phenomenon that we learn about called the Dunning-Kruger effect. Essentially, some scientists described how some people don't know enough to know what they don't know.

And this I see all the time with immunology, people think they can take a weekend course, and learn how the immune system works, how it misbehaves, and do something about it.

This is chapters 1-3... but the real learning is in chapters 4 and beyond.

That's why rheumatology and allergy immunology fellowships are a minimum of 2 years.  

It takes a lot of time & practice to comprehend the complexity, the nuance, and the gray.

The realization that although the textbook is helpful that there are millions of ways the immune system can misbehave.

Every single person is unique. And certainly, there are patterns that we follow that result in particular diseases that we see.

But in the end, it's not as easy as it looks or may seem at first glance. 

I don't mention all of this to toot my own horn. I mention this because I see so many people taken down the rabbit hole by folks who don't know what they don't know. 

Folks who think they are experts after a weekend (or even 6-month) course. 

Folks that then want to sell you a cookie-cutter series of unstandardized (read expensive) labs, a complicated diet, detox or supplement regimen. 

Folks that are going to make serious money off of each and every one of those recommendations. 

In part 2, we will dig into how you can best share your story with your immunologist. 

If you want more insider tips, you are going to love my 3 Secrets you Need to Know about Anti-Inflammatory Living.

You will learn the truth behind one-size-fits-all plans, elimination diets, food sensitivity testing, vitamins, and supplements. Check it out here!