Read, learn, work it up, go to the literature. Information is control.
—JOAN DIDION, THE YEAR OF MAGICAL THINKING
When you’re navigating a chronic illness, a host of resources outside your provider’s office can help you stay on top of research-based practice. There is an art to searching for medical information—one that, luckily, you have access to for free and don’t have to tackle alone! Pair up with a librarian at a public or university library, or at the medical center where you’re a patient. As a general principle, we would all fare better if we elevated librarians to a place of higher standing in our society. Their expertise extends far beyond cataloging. In an age where new information swirls around us at an inhuman pace, the ability to find what one is looking for is an art—one that librarians have mastered, including by searching the web. Rather than going it alone, Googling “Newest treatments for progressive-relapsing multiple sclerosis,” and sifting through hundreds of thousands of results, find a librarian. Discuss your most pressing questions with them, and let them guide you through a search in their databases.
If you do want to do some research on your own, the National Library of Medicine is the place to start, as outlined in the section “Your Smartphone as a Medical Device.” When you’re searching the literature, look for “peer-reviewed research,” “patient-centered outcome research,” and “comparative effectiveness research.” The terms indicate excellent methodological practices. Acquaint yourself with the nearest academic or teaching hospital (those nested within university settings in major cities). They tend to house specialists across disciplines, who are likely to approach your disease from many angles. They also house the most sophisticated medical libraries, with access to newly published studies the moment they become available. A comprehensive list can be found at http://www.aahcdc.org/about/members.
Once you’ve selected a university, locate the “research” section and browse the various departments and centers. On these pages, you can identify labs investigating topics related to your disease. These pages will allow you to find researchers (also called PIs, or principal investigators) considered experts in their areas, and browse their recent publications. It’s common for researchers to list their academic email addresses on these sites, and if you have a specific question, you can reach out. While it’s not part of their job description, I don’t know a medical scientist around who wouldn’t be willing to talk to a patient who approached them with a spirit of inquiry.
My instinct is to turn to the literature and immerse myself in facts when I’m overwhelmed by the unknown, but I appreciate that this isn’t soothing or helpful to everyone. Still, your provider doesn’t have the time or resources to familiarize themselves with every study or novel treatment option that springs up regarding your disease. Being able to do research yourself will help you advocate for yourself more effectively.
Clinical trials provide a portal to the expansive world of medical research. They grant access to medications, therapies, and sometimes life-prolonging procedures the mortal world of hospitals and practitioners don’t yet have in their arsenal.
Clinical trials run the gamut, from providing a procedure at a reduced cost when your insurance won’t cover it, to offering novel interventions. The latter don’t come without risk, but if they’re successful they may offer a great restoration of health and quality of life.
If you find yourself facing roadblocks at every turn—or even if you’re just curious and would like to participate in research, a virtue in its own right—take a look at the current National Institutes of Health listings at http://clinicaltrials.gov. Here you’ll find a registry and database of federally and privately supported clinical trials conducted in the United States and around the world. You can search at random for trials or look them up based on specific conditions, like multiple sclerosis or Parkinson’s disease.
Research Match (http://www.researchmatch.org) is a new tool that pairs you with studies based on your personal profile and medical history, whether you’re healthy or struggling with a condition. The site provides a free, secure registry connecting you with researchers around the world who are looking for new participants or who specialize in areas of medicine you’re looking for help in.
Hermes has always been among my favorite characters in Greek mythology. He’s an endearingly mischievous and compassionate god who liaises between worlds with the agility of a falcon and the charm of a politician. He’s a messenger, and he takes great pride in his talent for protecting and relaying information.
Like Hermes is for the cosmos, you are a vital conduit of information in the world of modern medicine. In this world there’s no herald, no spool of thread that connects the dots from one encounter to the next, no assurance that the parties involved in your care will get the message.
The unraveling of communication in a medical landscape is perhaps the single largest source of error. There are so many places and ways information can fall through the cracks—from building to building, PCP to specialist, and one appointment to the next.
It can be helpful to draw a web to understand the complexity of care coordination (like they have students do in nursing and medical school). Think of a person with a chronic illness and then list every person and entity that interfaces with their care in a given month. For example: primary care, specialist 1, specialist 2, pharmacist, mental health provider, laboratory, hospital, outpatient clinic, informal caregiver, advocate, social worker, physical therapist, nurse, insurance company.
Consider all the people orchestrating different elements of care, all the people between whom information essential to your case is passed back and forth after it’s altered or updated. The abundant opportunities for dropping the ball become clear. It’s a symphony without a conductor.
And this problem doesn’t just apply to someone with a complex chronic illness.
Let’s say you’ve been experiencing random bouts of numbness and tingling in your limbs, and it’s alarming you. You present to your PCP, who decides to run some labs, which are collected by a medical aide and sent off. The results are processed in a few days. This part of the process is generally pretty streamlined.
When the results come back, someone in the office calls you, or you get a message via your online portal, to say that the labs came back normal. The PCP then decides to send you to a neurologist, who orders an MRI and another battery of tests, neither of which concludes much of anything. Then you’re sent to an endocrinologist, and so on . . .
But who is making sure the tests ran by Provider A are reviewed by Provider B? Who is ensuring that your medical history has gotten more than a glance by each party? If Specialist A tells you to wait and monitor for other symptoms that could indicate X, who ensures that your PCP is aware and also monitoring you for X?
Rather than bouncing from one appointment to another, assuming everyone is talking behind the scenes and coordinating things, you have to channel Hermes. You have to know and protect the details of your case and ensure they get from place to place, person to person.
In order to coordinate your care, first you need an understanding of the basics of the plan. It’s common for a patient’s ears to perk up when they hear a specific diagnosis, or to selectively remember only the information that alarmed or relieved them and not process the rest. Providers are quick to walk out the door without explicitly describing the plan, because now patients are handed “recap” paperwork when they leave. These forms can be bare-bones and insufficient. Your task here requires a back-and-forth with your provider until you understand what the follow-up plan will entail, to the extent that you can repeat it back to them.
Begin each appointment with a quick sentence or two that covers the plan, and where you are along the plan’s trajectory. For instance:
Two weeks ago I saw Dr. Sharp for numbness and tingling in my lower legs, which began in June and occurs daily. She ordered these tests and sent me for an MRI, and now I’m here. She explained that possible diagnoses could be A, B, or C, so now I’m seeing you to determine or rule out MS.
Know your medical history and make a point of revisiting it with each provider. Don’t assume that your PCP called the specialist to talk about your case. Don’t assume the specialist was meticulously reading over your chart for an hour before they walked into the exam room. These things can happen, and should, but all too often they don’t. For this reason, if your PCP intends to refer you to a specialist, it’s worth asking them to call the specialist and discuss your case before sending you.
It might also be worthwhile to bring with you that compilation of your medical records (see “Your Medical Records”), or at least your healthbook, so you can easily reference appointment dates, provider names, tests, results, and other important details while the specialist is in the room with you. What constitutes important? Any serious conditions, surgeries, or symptoms you’ve had in the past. Any areas of concern in your family history. Abnormal test results of any sort from the last year, as well as your most recent test results. A list of any medications you’ve recently been prescribed.
Ensuring that your care is coordinated is a task that shouldn’t fall on you, but it does. It’s an imperative task that no one in the medical world is responsible for, and in its absence you will notice problems arising from information not dispersing where it needs to. Adopting this mind-set alone will greatly impact your care for the better.
Early into my relationship with my friend Gabe, I noticed that as we settled down at a bar or restaurant he would shuffle people around so he could sit at the end of the booth. It was a curious habit, an idiosyncrasy for someone who tends to drift around with ease.
A month or so into this game of musical chairs, Gabe told me about his hearing. For several months he’d been experiencing intermittent deafness caused by a discordant, shrill ringing in his ears. The symptom appeared out of thin air, making the jump from unpleasant to painful in a fairly short amount of time.
As the winter progressed, other symptoms joined his ears in causing trouble. The most notable was spells of vertigo. He’d be dressed to head out to play basketball or at work, and suddenly be consumed by a bout of dizziness and nausea. He’d lose his balance and sense of corporeal perception, and experience motion sickness to the point of vomiting.
If the other symptoms were concerning and inconvenient, the vertigo, last to develop, was debilitating. Though its duration was usually no more than three to five minutes, he felt off for the rest of the day, like he was drifting through those eerie skies that follow a summer storm in the Midwest.
Convinced there was a diagnosis to explain this onslaught of vestibular distress, he was motivated to see providers and get help. He was proactive, starting with his PCP, then diligently scheduling specialist appointments with ear, nose, and throat doctors and allergists.
They sent him for CT scans, allergy shots, acupuncture, and chiropractic appointments. They sent scopes through his nostrils and ear canals to peer into the strange little apparatus that controls hearing and balance, something like a miniature amusement-park ride made up of delicate bones suspended above a tide pool. Apparently the root of Gabe’s problems was that his “tide” was too high—excess fluid in his apparatus was causing pressure. Doctors advised a low-sodium diet, suggested plastic surgery to alter the roofs of his collapsed sinuses, and told him to avoid common allergens. All their advice was speculative and came with the caveat that these things may or may not help, may or may not be related.
So Gabe changed his lifestyle with commitment. He avoided dogs and pollen, swapped salted butter for its gloomy cousin. He followed up with integrated medicine, all the while remaining good-natured. He retained a level of optimism throughout that dizzy winter that impressed us all—because he was metaphorically running into walls, opening Murphy doors that led to nothing.
Little made a difference, and the bouts of vertigo started to come in closer succession. Pretty convinced he had Ménière’s disease, a chronic condition with poorly understood etiology, he turned to the Internet for information he wasn’t getting from the medical establishment. He wound up on message boards, reading threads that catastrophized the reality of Ménière’s. He went down a hole and came back horrified.
It’s difficult to reconcile Gabe’s apparent vitality with chronic illness and debilitating pain. Following the Internet spiral, he wore trepidation on his person. “I never know when I’m going to have an attack,” he explained, “but when I do I feel safer in my house, near my bed, where I can ride it out. I worry it will happen when I’m working. Actually, I always worry now. I’m hypersensitive and anticipate every little thing that could set it off and should therefore be avoided.” It reflects the fears of many of my patients with chronic illness. The half-life of anticipation can be longer than the half-life of discomfort.
One day, a family member who worked nearby told him about a woman named Ellen who also had Ménière’s. Gabe called her to set up a time to talk, which resulted in an hour-long phone call. Ellen was a stranger who became a vital source of reassurance and information on the realities of Ménière’s: what not to worry about, the semihelpful to game-changing interventions, the medications to take and to avoid. She’d lived out some of his greatest worries about the disease. She became proof that a fulfilling life with Ménière’s was not off the table.
Ellen was certainly a portal to hope when Gabe started to become hopeless, and she had advice and perspectives to offer that in many ways surpassed those of professional help.
While the idea of peer support runs counter to the way medical information was handled in earlier generations, when disease was not the stuff of dinner-table conversation but a private affair between patient and provider, our new impulse toward connecting has brought many new, sophisticated peer-support resources. These can link patients, even across large distances, in efforts to improve the course and outcome of chronic illnesses. Here are a few ways to access these resources:
START WITH YOUR PROVIDERS
Just as you can ask doctors and nurses for patient references, you can ask if they know any patients with your condition who might be willing to talk with you. Providers and patients alike are generally willing to put forth effort to connect people under these circumstances. It fosters community.
CONNECT VIA THE INTERNET
You can also use digital resources to access a variety of accounts of firsthand experiences with the disease or symptoms you’re facing.
I advise against places like Reddit, since its threads weave a tangled web of contradictory information and malice that wavers on the edge of one big misery-loves-company party. The information isn’t monitored, and one person’s platform to vent shouldn’t be another’s source of data.
Instead, try http://www.patientslikeme.com. This site has a directory that works similarly to Facebook’s, and you can use it to seek out people around the country who share your condition. The directory is set up to help patients interface both in public messaging forums and on a one-on-one basis. You can view individual profiles and create your own, with features like charts that highlight trends in your symptoms at various points along your disease trajectory.
You can also attend support groups in person. They’re usually set up by patients, so they’re free of ties to any professional or commercial interest. They’re a good place for unbiased and helpful views on treatment options. The Office of Disease Prevention and Health Promotion has a search tool to find support groups in your area (https://healthfinder.gov/FindServices/SearchContext.aspx?topic=833).
In the event that you have a diagnosis, but the disease is less culturally recognized or understood, remember that you may need to be more intentional in asking for support.
In her piece “Cancer Is a Magic Word” in Nightingale magazine, writer Erica Schecter writes:
Having lived with ulcerative colitis for a decade, I thought I knew what it meant to be sick in the U.S.—but when I got cancer, I realized there’s a hierarchy of disease. . . .
Say “I have cancer,” and no one asks for explanations or justifications. Instead, they want to know all about the treatment side effects. I could miss as much work as I needed to. Friends flew out to visit me, left work to take me to chemo, and bought me books and games to make the long hours in the infusion suite pass more quickly. I was inundated with texts and calls, everyone just saying: “I’m here for you. Tell me what you need.”
Earlier in the story, Schecter recounts the experience of receiving and living with a diagnosis of ulcerative colitis a decade prior. The inflammatory GI disease about which her friends and coworkers knew little and didn’t have a framework for, in ways, had a more severe impact on her life than the cancer. This was in part because the disease didn’t carry the same medical clout or instant recognition cancer carries with it.
Her story is a good reminder that it might take very intentional communication with friends, family, and peers if you suffer from a less well-known disease that takes a significant toll on your life. Remind yourself that they don’t have an accessible framework to understand its impact and help you unless you reach out for support and explain. Solicit help with this from your nurses and providers, who can give you resources to assist in educating the people in your life about the condition, and give you ideas for how they can support you.