Some health issues have a sudden onset and a relatively short half-life. Others are more of a chronic brew. Symptoms gradually surface, or wax and wane in intensity. Sometimes a symptom on its own is enough to alarm you and send you to your provider. Other times, seemingly unrelated symptoms come in tandem or one after another in quick succession, causing you to wonder if the numbness and tingling is a symptom of the disease you’re already medicating, a side effect of that medication, or an unrelated issue entirely.
Times when new symptoms manifest in the body can be emotionally trying. Vulnerability and distress intensify when we don’t know the source of the pain, the symptom, or the side effect. Turning to medical experts for guidance and assessment can feel both urgent and daunting, especially when there’s such limited time to give them insight into your physical reality.
The modern medical system doesn’t always deal with these brewing problems well: It’s stingy with its time, specialists often fail to coordinate with one another, and there’s a widespread tendency to slap a diagnosis on a patient too quickly. Alternately, there are times an accurate diagnosis can take years; countless scans, tests, or episodes disseminated through space and time. For this reason patients with chronic illness spend significantly more on medical care as providers try to rule out diseases and use trial and error with medications.
The following sections are structured to support you as you attempt to get a diagnosis. They’ll also empower you to trust yourself and elicit support from several resources as you wait for one.
Our culture has an obsession with specialists. Patients and providers alike have a particular affinity for them: providers, because they can punt off a case that eludes them or that they don’t have sufficient time to get to the root of; patients, because they assume a referral means they’re finally being heard and that they’ve been granted access to someone who can help. But while specialists are vital to the healthcare system and they indeed help many of us, they’re not always the answer. The vantage point of a specialist is often limiting—they’re not trained, like an internist or a family medicine provider is, to hone in on the interrelationships of the body’s systems. They assess an illness through a specific lens, limited by the nature of their specialty.
Keep the following in mind when you consider entering this territory looking for a diagnosis.
A pattern called “prescribe and refer” gets at the heart of the problem with our proliferation of specialist send-offs. It works like this:
You present to your primary practitioner with a cluster of symptoms you’re experiencing.
The provider runs a battery of tests. If they don’t arrive at a clear-cut diagnosis, they may move on to treating the symptoms with medication. They may toss around words like “functional” or “idiopathic” at this point—meaning they do not have an answer.
If the problem does not resolve from treating the symptoms alone, the provider refers you to a specialist. The entire process then stands to be repeated if things do not resolve.
The specialist may send you to a different specialist, or ask you about psychiatric symptoms—like depression or anxiety—that would confirm it’s psychosomatic (relating to mental health).
Of course this doesn’t happen 100 percent of the time; specialists are vital, but it’s a pervasive practice. It’s also a significant source of disappointment, frustration, stress, and financial investment for patients. On this topic, the experts I interviewed said the same thing: Be wary when this bouncing-around-to-specialists commences, because this is where the role of overseeing the whole case and connecting the dots is often abandoned. There’s no one putting the puzzle together or ensuring that clues are shared and discussed between providers. (“How to Be a Conduit” will cover this issue of care coordination extensively.) Often the answer is there, in the picture as a whole including specialist input, but no one steps up to put all the pieces together.
But you can disrupt this ineffective pattern and fare better as you move through the specialist train. Once the medical web extends from your PCP’s office and includes different specialists, you simply hold down the fort, knowing you are the single most important conduit of information
Maximizing Specialist Appointments
At each specialist appointment, ask that they do a full physical assessment themselves. Don’t let them jump to talking about prescriptions, quick surgical fixes, or referrals without so much as examining you.
It’s likely that a waiting game will follow your initial appointment, and this is where things get slippery. The provider may say they need to order tests or send you to another specialist, or they may hint at a rather amorphous plan that involves a combination of treating symptoms and waiting and seeing.
Before the appointment concludes, get answers to the following questions so you are not lost in the abyss.
If tests are ordered:
What are the specific tests, and what are they for?
When will they be scheduled?
When will you have the results?
How will the results be communicated to you?
If medication is prescribed:
Is it to treat the symptoms, or a disease?
What are the side effects?
Will you need to stay on them indefinitely?
If you get a referral:
Why does the provider recommend this particular specialist?
Will specialist A remain involved in your care?
Before you leave, know the specifics of the game plan. What are you waiting on before the next appointment—a test result? A referral? A trial of a new medication to see how it helps?
The bottom line: Go in, present your case in a thoughtful and articulate way, and focus on care coordination. Don’t assume there’s a greater plan you’re not privy to, but instead leave with a clear sense of the plan and a timeline for next steps. If trips to specialists don’t yield any answers, take the notes and results back to your PCP and go over them together.
When You Can’t Get a Diagnosis
Sometimes not having a diagnosis is worse than having a bleak one. The medical world relies on diagnoses to guide treatment, insurance companies demand them if they’re to pay, and patients look to them for validation that what they’re experiencing is real.
Struggling with debilitating symptoms without a diagnosis can bring on its own kind of hell. Like the nightmare where you’re yelling out for help and no one can hear you, or nothing comes out of your mouth when you try to speak. Or the one where you’ve been framed and not a soul in the village, not even your own mother, believes in your innocence.
When you can’t get a diagnosis, frustration often results from dealing with a medical team operating on trial and error, offering only small bouts of remission or alleviation. It’s also isolating. There’s a shared social understanding about cancer and ALS, but there’s no real equivalent for chronic fatigue, or bouts of vertigo. There’s a hierarchy of disease in our world, and when you don’t have a label to put on your condition, there’s extra strain in asking for accommodation and understanding from the people and institutions around us.
It can all add up to the worst of conclusions: Am I imagining this? This question logically follows the experience of being dismissed as an unreliable witness to the things going on inside you.
To find yourself somewhere in between suffering and treatment, without a light at the end of the tunnel, is a time of particular vulnerability. It’s also a crucial point of decision-making, because you can either accept the question mark or tap into your reserves and keep trying to get an answer. As I say in this book’s preface, this work can be exhausting and overwhelming when your stamina and health are compromised at the outset. While coordinating your specialty care is especially important here, it will also serve you to effectively communicate your pain, and enlist the support of your family and larger community. Here are additional tools and ideas.