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 Part 2 the 5 secrets that your immunologist may not quite have the time to talk to you about during your office visit.

Click here to read Part 1 if you missed it.

2. Your history is of the utmost importance. 

Most physicians would tell you it is more important than lab results.

One of the first lessons eager medical students are taught is to “Treat the patient. Not the numbers.” 

Though I have to admit, it's probably one of the first things we forget, when we are under a time crunch, under pressure, or suffering from moral injury.

I mention all of this is not to throw my colleagues under the bus by any stretch.  

But rather to share a reality check.

Most medical professionals were feeling the strain BEFORE the global pandemic. Expected to see more patients with higher complexity in less time. Spending more time arguing with insurance companies for treatments we know our patients need. 

As a result, many healthcare professionals are leaving clinical practice.  Those that remain in many cases have even more to do in less time. 

Vast majority of those of us in healthcare were called to this profession to serve others. To ease suffering. 

When you can’t help those that are suffering in the way that you know they should be treated, it can feel like death by a million papercuts. 

This is the moral injury so many of us have encountered. 

All these different system-based issues cause our brain to go into fast thinking mode (called System 1 by Kahneman). The lizard brain senses danger and uses fast-track circuits. This is unconscious, emotional, instinctive thinking that can result in snap judgments. 

This is in contrast to slow thinking (System 2) which is conscious, deliberative, and more rational.  

Both types of thinking are critical in the practice of medicine. Consider an ER physician having to make a split-second life or death decision. Thank goodness for System 1 thinking! 

I would argue that considering chronic invisible illnesses more often requires System 2 circuits… which may be just another reason why the health care system as it stands doesn’t do us any favors. 

What is a history? 

A medical history is the story you tell us during the visit or the pattern, timing, quality, and severity of your symptoms. 

What symptoms are you most concerned about? When did they start? Describe them. How severe are they? Have they changed since they started? What makes them better? Worse? 
What are you most worried your symptoms could be?
What are the goals you have for the visit? 

I love when patients come out and tell me what they are most worried about and if they have particular objectives they would like to see addressed at the visit. This helps us work together as best able!

So much to say in so little time…

One of my biggest gripes with the medical system as it currently stands is the lack of time we are able to spend with each patient. 
Most new patient appointments are allotted about 30 minutes and a follow-up appointment is more likely a pitiful 10-15 minutes. It makes it challenging to stay on schedule… let alone try to ensure each and every patient has a thorough visit that engenders a trusting therapeutic relationship. 

With this in mind, it can be incredibly helpful to have some notes about what you’ve been experiencing handy along with your questions to help streamline the information-gathering part of the visit. 

And this is where I really recommend journaling your symptoms in order to take in, take a broad look at what you're experiencing, look for patterns, and then summarize what you're experiencing. This process is also really helpful to reflect on what the most troublesome symptoms are during your visit. 

I find this to be really helpful when my brain fog is acting up and to help keep me on track with pre-visit jitters when meeting a new physician. 

By doing this, you are leaving a bit more time for discussion. 

So how can you make sure that your story is being heard? 

One of the most heartbreaking things I hear from patients and clients is that they have not felt like anyone has actually listened to them. 

Some will call this phenomenon "medical gaslighting". 

The term gaslight comes from a 1944 movie by the same name where a husband manipulates his wife by adjusting the brightness of the lights to the point where she thinks she is losing her mind.  

It is a subtle form of manipulation and emotional abuse causing us to question our own reality. Do I really know what is going on in my own body? Maybe this other person knows better than I know myself? 

Medical gaslighting seeks to describe the inherent power differential between healthcare professional and patient but I don’t think it is that easy.

What this term doesn’t fully capture is the much deeper history…

History of fraught with patriarchy. Masogeny. Racism. Violence. 

A history that especially ignored women. 

Attributing nearly all her health concerns to a wandering uterus, hormones, or her fragile mental state.

Centuries of women having their own judgment and intuition ignored or denied. 

A history that is just now starting to make its way into the medical school curriculums. 

So yes, we know our own bodies intimately well better than anyone else in so many respects...

But physicians also have a great body of knowledge about how the body works and doesn't work too. 

Ideally we find respect and appreciation between these two bodies of knowledge- the deep intimate self-trust and knowledge AND scientific knowledge to help forge a path forward toward health and healing.  

Although it isn’t a magic wand for each health care professional, here are a few tips to try out.

• Asking that they briefly summarize to ensure that they are hearing you correctly.
• Ask that they document your concerns in the note. 
• Ask them if their thoughts or recommendations would differ if it were a family member in your place.

All of these are trying to help snap someone out of “fast-thinking mode” and back into that slow-thinking mode. 

If you are having trouble feeling validated or listened to in your conversations with your care providers, then that is a reason maybe to think about a second opinion or bouncing things off of a trusted advisor or friend, to kind of get some ideas of where to go next.

Stay tuned for part 3 where we tackle the  “great news, your labs are normal” scenario… IKYK what I am talking about...

**Of note, I realize the onus should not be on patients to fix these issues and I am hard at work on helping be the change in medical education and the system. 

In the meantime, I don’t see the system changing any time soon…so I wrote a workbook last year to help you communicate better with your care team. 

If you would like to grab a FREE electronic copy of my Building Bridges workbook so that you can go into your next appointment feeling confident, click here.

If you would prefer a printed copy delivered directly to your doorstep, it is available for purchase here.