Stethoscope and glasses on laptop at doctor's office

Disease Management:

When You've Lost Trust in Doctors...

Margaux Thieme-Burdette May 30, 2020

Have you been told “it’s just stress”? Diagnosed as a hypochondriac? Has it taken the typical 5-7 years to find a diagnosis? Or maybe you’re still searching for one.

The exhaustion is real!

It’s a long road to figure out what’s wrong and how to address it, without getting derailed by judgement and misdiagnoses. The experience of managing chronic conditions can be as agonizing as the symptoms themselves.

So who do we trust – the medical system we feel has let us down, or our untrained selves?

Graphic showing a balanced approach between relying on doctors and self-reliance

At the beginning, when we’re new to the world of chronic health issues, we tend to cling to the medical system, confident that the doctors and specialists will have all the answers.

It may take years before we realize that they’re only part of the equation.

When the lightbulb goes off, we might slingshot towards the other end of the spectrum and overlook the value in maintaining and building relationships with medical professionals.

WHY WE RELY ON DOCTORS

Through rigorous schooling, residency, and work experience, they gain – in short – an understanding of how the human body works and what happens when systems don’t function properly.

Naturally, we look to our doctors for answers. We watch them fix broken bones and heal wounds, perform life-saving surgeries, and administer medications to improve quality of life. 

From a young age, we view them as the one source of knowledge when it comes to the body. 

However, we tend to see their status and medical school education as a stand-in for our own personal wisdom. This also means we may overlook the value in other fields of medicine.

WHY WE RELY ON OURSELVES

The doctors we’re supposed to trust have let us down one too many times. We’ve grown bitter, disillusioned. We therefore lack the motivation to return and be subjected to more misdiagnoses, judgement, and rejection. Instead, we attempt to carve our own paths.

Through online research and talking with peers, we can discover fields of medicine and therapies not typically accepted or promoted within our modern (or Western) medical system.  

We may be introduced to functional, integrative and naturopathic medicine, which are particularly well-known within the chronic illness community. We may learn that pharmaceuticals aren’t always the answer. We may uncover the power of nutrition, meditation, essential oils, and supplements, and incorporate some of these into our lives.

These bits of knowledge that seem to have been “hidden” from us can further calcify our decision to go rogue.

However, we soon learn that functional medicine and other whole body approaches are not usually covered by insurance. The cost is too high for many, and we can easily fall into a space of self-reliance that is less than healthy.

THE MIDDLE GROUND

One person alone cannot build the path to better health – not you, and not your doctor.

Knowing this doesn’t make it any easier though. A rolling sea of worries can easily shake your resolve when you so much as think about making an appointment.

Will they shame me for not going to the doctor for years? Will they order invasive tests? Will they actually listen to me?

Walking into a doctor’s office again can feel like ripping open old scars into fresh, streaming wounds. You might want to slip your armor back on, and march in there with a fiery list of rebuttals to the comments you expect to hear.

It’s not a cakewalk. And you might have to deal with “it’s just stress” “here’s a prescription” “your labs are normal” all over again. But by expecting the same results every time you walk into an office, you’re only perpetuating that pattern. Remind yourself that this is a new journey, with new doctors and new possibilities, and that you are also different. Let the past medical-related traumas give you only their wisdom, not their lurking presence. 

With perseverance and an open mind, you can find a happy medium.

On your search, look for professionals whose communication styles work for your needs, who listen and acknowledge the value you bring to the table, who are open to exploring “alternative” or “complementary” approaches, and who are able to collaborate with your other practitioners.

What to Keep in Mind

  • The medical landscape is constantly changing. New research is exploring disease in relation to topics like the microbiome, diet and lifestyle, and meditation, thus expanding our understanding of the human body and what causes these conditions. It is possible that the doctor you saw last year may now be taking a whole new approach to chronic illness.
  • Educating yourself is vital. By doing your own research, you’ll be able to explore different treatments and side effects, ask questions about the mechanisms behind your condition, and request certain tests. As a result, you’ll better understand your doctor’s approach and be more equipped to work as a team.
  • Be open to shopping around. It may take time to find the right doctors; try to avoid betting all your chips in one place.
  • Shift your expectations. If you expect to leave the first appointment with answers, you may leave feeling disappointed instead. Nothing this complex is going to be seamless.
  • They may not understand your needs right off-the-bat. Describe what kind of relationship you’d like to have with your doctor, the approach you’ve been taking towards your health, how you like things explained, etc.
  • It’s a two-way street. Advocate for yourself, while remaining open to what they have to say.
  • Speak up when something doesn’t feel right.
  • Pay attention to how you feel around a new doctor. Supported, relaxed, and motivated? On-edge, rushed, and unheard? If your styles don’t match, it may be time to move on.
  • You have the control here. If you’re unhappy, you always have the option of looking elsewhere. It’s another copay and it can be disappointing and frustrating, but it’s well worth it. Remember that there are wonderful doctors out there – it’s just about finding the right person or team for you
  • You are a participant in the process of change. Each time you interact with a practitioner, you become one more patient with autoimmune disease or an undiagnosed pattern of symptoms. One more patient who has had a hard time finding proper care. One more patient who has found hope in holistic approaches. While you search for answers, keep advocating for yourself. The more you educate yourself and speak up, the more the medical landscape is compelled to adjust.

How to Be Prepared

Before you even step foot inside a doctor’s office, there are a few things you can do to start the process and ease yourself into this new undertaking.

  1. Collect all relevant paper records of lab tests, images, prescriptions, and doctor’s notes from previous visits
  2. Make a list of all medications you’ve taken, and any reactions you’ve had
  3. Write a brief synopsis of your chronic illness journey, including when and how it began, major symptoms, significant treatments, and any diagnoses you’ve received.
  4. Get recommendations first! If you’re in touch with your local autoimmune disease or chronic illness community, ask around to see what doctors they work with and like. This can save you time and stress, especially when you’re just starting out.
  5. Come with questions. Go through any notes from research you’ve done overtime. Are there certain tests you want to request? Therapies you’d like to know more about? Unanswered questions or concerns collecting dust in the back of your mind.
  6. Know how much your insurance covers. Which specialists and kinds of care does it cover? What about lab work? Diagnostic imaging scans (ultrasound, MRI, X-ray, etc.)? Medications?
  7. Understand your limits. If you’re also working with a functional doctor and are trying to get functional labs done through your PCP, they might not be able (or willing) to order them. If they are, make sure you know exactly what tests to request, find out how much insurance will cover, and remember to request paper copies.

It’s only natural to be exhausted from the diagnosis/treatment hunt. By all means, take a break if you can. Letting everything sink in could very well give you a fresh perspective and a renewal of energy and determination.

But try to avoid letting that break turn into years and years of figuring it out on your own, without the guidance of professionals.

Think of the relationship with your doctors as a detective team working together to investigate your health issues. Each person has wildly different skills, but both are vital in order to solve the case and work towards a better outcome.

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