Surviving and Thriving With an Invisible Chronic Illness_How to Stay Sane and Live One Step Ahead of Your Symptoms

by Ilana Jacqueline

  The older I get, the more I know with real certainty that no one knows best—not your mom, doctor, best friend, or that guy online. Nobody has the table of contents. This is a “choose your own adventure” kind of story. You make the final decision on what medications you take, what surgeries you go through, whose hands you put yourself in, and most importantly, whose voice you choose to speak for you when you cannot speak for yourself.

  Finding a Medical Ally

  While it may not seem like a huge hurtle for others, managing your healthcare when you have an active disease is a large responsibility. Selecting your own doctors, researching your own medications and surgeries, handling your health insurance, and monitoring your stress and mental health is a full-time job. Even though you may be able to delegate some medical responsibilities to the doctors you feel are competent, you must always take the lead. This doesn’t mean arguing against every suggested medical opinion, it just means making sure that the professionals around you are on the same page as you.

  How can you ensure that you and your medical team are on the same page? Discuss your thoughts and opinions before the appointment and do your research. Being a prepared patient helps your team to focus in on the best solutions. My goals vary from specialist to specialist. When it comes to my ENT doctor, I want to make sure he gets the right cultures for any infection I might have. I’ve discussed my immune deficiency disease with him, and it’s important to me that I only ever go on antibiotics when they’re one hundred percent necessary and when we’ve tested a culture to see what it is resistant to. Because of this communication, I can avoid multiple prescriptions for the wrong problem! By sticking to my guns and making sure my wishes are followed through on, I’ve managed to make a positive impact on my care.

  Finding a New Doctor When You’re Undiagnosed

  When you’re still searching for a diagnosis, it’s important to find a doctor who has the time and capabilities to do the necessary testing and research you’ll need. How can you know who has the time when you’re flipping through your insurance booklet? Or worse, how do you find a good match when you have no insurance and have limited options of where you can be treated?

  First thing you’ll need to do is consult with a primary care physician (PCP), also known as a general internist, so they can categorize your symptoms and push you toward the right specialist. You can find one either through a list you can request from your insurance company or simply by searching online for an internist in your area. Word of mouth and online reviews and ratings can be helpful, but you’ll probably get the soundest advice about the doctor through their office manager. When making an appointment, ask their office the following: “I’m an undiagnosed patient with a large cluster of symptoms. I may need to sit with the doctor longer than ten minutes to explain everything. Do you think he has the time to consider this, and if so, what would be the best time of the day to schedule my appointment with him?” You may also want to ask what his patient load is. You’ll want to find a doctor with a small patient load if possible. This means they don’t have to double book as often and you’ll spend less time in the waiting room and more time with the treating physician.

  Before you see a general internist, you’ll want to call and speak directly to someone at your insurance company. You’ll need to ask whether you’ll need a referral to see a specialist. You’ll also want to ask what the co-pay is to see a specialist and if testing that is done in-office is covered by your co-pay. If you don’t have coverage, it’s time to consider low-income insurance options in your area.

  Finding a New Doctor After a Diagnosis

  If you’ve already been diagnosed, and you’re looking for a specialist, you’ll be able to narrow down the right physician for you a lot more easily. You’ll want to ask the same questions to make sure this doctor has the time and patient load to realistically take on a complicated, chronic illness patient. Once you’re at your appointment with the doctor, here are a few questions you can ask:

  Do you regularly treat patients with my disease?

  What sort of treatments are the patients you are treating with my disease receiving?

  Are you current on all the new research? (You may want to bring in any papers on new medications you’ve researched and may want to try.)

  Do you have same day/next day appointments if I have an emergency?

  Are you affiliated with my local hospital and will you be able to direct my treatment in the emergency room and during a hospital stay?

  If you don’t have insurance and your specialist has decided that you need treatment, you still have some options on how to obtain that care. Hospitals will generally work with patients who need treatments by putting an “affordable” payment plan in place. Drug companies have also been known to sponsor treatment for patients or provide medications for free or at a discounted price.

  Considering a Concierge Doctor

  You may be wondering what a concierge doctor is. Maybe you’ve seen them in movies and TV shows? They also exist in the every-day world to treat patients like you and me! These doctors take on a smaller patient load (generally under 300 patients compared to most general internist practices which have well over 1,000 patients.) For an annual or quarterly fee (around $1,800 to $2,000 per year), you’ll have a doctor at your beck and call. Perks to having a concierge doctor on retainer are:

  having their personal cell phone number to reach them at all times

  having a doctor who is familiar with your case even without his file in front of you

  having a lead physician to guide your care in the emergency room

  These perks can be a huge relief for patients with pain management problems who are constantly scrutinized, patients with complicated medical histories, or patients with rare diseases who have no experts in their area and need someone committed to researching new and innovative treatments. Contrary to popular belief, care by these doctors isn’t only for the wealthy. The average cost of a concierge physician is around just $150 per month. That’s less than an average car payment or even the cost of a pastry and a coffee each day. Many concierge patients have found that reliable care by a doctor who knows them well resulted in lower health care costs. As a result, there were fewer emergency room visits and long hospitalizations, less unnecessary or repetitive testing, and more preventative care.

  Doctor Recommendations, Referrals, and Bad Reviews

  I’ve got an ENT that I’d talk your ear off about. He’s the best ENT doctor in Boca Raton. I’m sure my sinuses would be forever sealed without his intervention. Recommendations from friends and fellow patients are always great tools in finding the best doctor for you. You’ll also want to remain open-eared when it comes to bad recommendations. I had to get through three bad ENTs to get to the good one. Lastly, if you have no friends or fellow patients who will reveal their favorite doctors, look to your general doctor to get a referral. (This only applies to referrals for specialists. Don’t ask your doctor for a doctor who can replace them. They don’t like that.)

  Check out the following websites to get you started:

  RateMDs.com: This site offers information and ratings for millions of doctors and health specialists around the world.

  Zocdoc.com: This site helps you find a doctor and book appointments instantly. You can also read reviews of each doctor by different patients.

  Healthgrades.com: This site provides information on doctors, specialists, and hospitals close to you.

  Referrals

  When asking your doctor for a referral to a specialist, you must be very specific about what you’re looking for. Doctors may work frequently with just one doctor, so they may suggest just that one doctor that they know. If they can’t suggest more than just that one doctor, that’s how you know they’re picking from a limited pool. Ask questions like, “Why do you recommend him?” You’ll want to know if they’re recommending them because they’re a good doctor or a good friend. Make sure to also ask if the doctor has performed this procedure
on a lot of their patients. A doctor can always recommend another doctor for treatment, but make sure he’s doing it specifically for the needs of your treatment. Lastly, ask which hospitals the doctor is affiliated with. This is a good question to ask to make sure that if you need to be hospitalized, the doctor will be able to visit you there to direct your care.

  Bad Reviews

  What if you’ve heard bad things about a doctor, but you’re unsure if they’re true or not? While most people would steer clear either way, you may have a limited number of physicians to choose from through your insurance company. Start by doing your own investigative process. Search online for more reviews about the doctor. Call the doctor’s front office and ask salient questions about their care. Review their education and experience level. If you’re feeling brave, go in for a consultation. Sometimes a short visit is worth the time spent to not miss out on what could be a good physician.

  Recommendations

  Some people just like to brag about how well connected they are. Just because they know and have seen a thousand doctors doesn’t mean that all of them had a great bedside manner and cured cancer during their fifteen-minute consult. When someone gives a good review, make sure to ask specific questions like: “Was the doctor familiar with your disease or did you have to explain it to them? Did they go over your entire medical history or just want the highlights? Did they read up on any new treatments or were they recommending a lot of things you’d already tried?”

  Your Recommendations

  Don’t forget that it’s your duty as a patient to keep that flow of information going. If you find a good doctor, shout it from the mountaintops! Don’t you wish that someone had steered you clear of that wacko surgeon that botched your surgery or kept you from even entering the geneticist’s office at that teaching hospital who made it his mission to humiliate patients in front of his teaching students? Doctors may vow to do no harm, but it is the patients who keep the good ones in business long enough to keep that promise. Now you have the tools to find the right care for you. Let’s put them to use.

  Ready to Choose?

  Found a doctor who might be a good fit, but you’re just not quite sure yet? You can do your research online or by checking with your referring doctor. Make sure you know and feel comfortable with the answers to the following questions before you decide.

  Is this doctor board certified? Are they licensed? (Check with your state’s medical licensing board if this isn’t explicitly listed in their credentials.)

  How long have they been practicing?

  Do they have any malpractice suits against them?

  Are they affiliated with your local hospital?

  Do they have malpractice insurance? If not, why?

  Do they take your insurance or can you work out an affordable financing plan for treatment?

  If the doctor you’re researching is a surgeon, consider the success rate of their past surgeries. How many have they performed?

  Comparing Treatment

  Most patients with chronic illness eventually develop a second or third condition. New diseases mean new symptoms, which means new treatments. Researching your new prescriptions can be helpful and it’s always smart to do your own research. Connecting with people who have had a similar surgery you’re considering or are currently taking a new drug you’re about to try can be a valuable source of information. When you pool a patient community’s knowledge of treatments, you end up opening doors you and your doctor probably haven’t even considered. How you evaluate a new prescription is similar to how you would refer, recommend, and rate a doctor. Ask around, look for reviews from other patients, and ask other patients to share their personal experiences. Did they react with certain symptoms? What has been the long-term outcome of taking this medication? Has it been a financial burden or has the insurance company been gracious about getting the generic? Did it do its job?

  The crux of patient advocacy can really be summed up into just that: Did the doctor, hospital, or treatment do its job? Was I treated with respected during it? In the next section, advocate Lauren Stiles talks about incorporating these two points into your basic fifteen-minute doctor exam.

  Getting the Most Out of Your 15 Minutes

  Stiles is the CEO and co-founder of Dysautonomia International, a patient organization that offers resources, organizes research, and hosts an annual conference for patients. Stiles has served in leadership positions on government councils, non-profit boards, and professional associations. She developed dysautonomia (postural orthostatic tachycardia syndrome) symptoms overnight at age thirty-one. After a relentless two-year quest to find an underlying cause for her symptoms, she was finally diagnosed with autonomic neuropathy caused by an autoimmune disease, Sjogren’s syndrome. Since co-founding Dysautonomia International in 2012, Stiles has been an outspoken advocate for individuals living with autonomic disorders. She has lectured on autonomic disorders at the National Institute of Health, Duke University, Harvard University, and Stony Brook University. Her work educating patients on how to receive the best care has hugely impacted the invisible disease community.

  If you are lucky enough to find a doctor who spends more than the usual fifteen minutes with you, that’s wonderful, but most of us are going to have to deal with those “it’s over before you blink” visits from time to time, especially when seeing a new specialist.

  You may have waited two years and sold your family heirlooms to get an appointment with Dr. Big Expectations, but you aren’t going to have all the time you want to tell him about your 101 weird symptoms, all the tests you’ve had, all the treatments that didn’t work, and why you fired your last idiot doctor.

  Assume you have fifteen minutes. You may be given more time, but it’s important to have realistic expectations. This is the reality of the hamster treadmill that is modern medicine. Your doctor is probably not being brief with you because he’s a jerk. He just has forty other patients to see that day, several hours of ridiculous forms to fill out, a hundred emails to read and respond to, and seventy phone calls to make before he goes home today. Doctors have the highest suicide rate of any profession because they are so stressed out. So, don’t take it personally when you don’t get all the time you need. No one else is getting the time they need either, including your doctor.

  Before you even make the appointment, ask yourself: “Why do I want to see this doctor?” This should be the goal of your visit. Does she have a special skill that may benefit you? Does he offer a test or treatment that you want to look into? Are you just looking for a second opinion? The following exercise is a great way for patients to get clarity on their needs before heading into an appointment.

  Make four lists before your appointment on separate pieces of paper:

  (a) questions you need answers to, from most pressing to least pressing;

  (b) your current symptoms, from most bothersome to least bothersome;

  (c) your prior diagnoses; and

  (d) your current meds and drug allergies.

  Put the date of the office visit and your name on each page. Give these to the doctor or the nursing staff when you arrive and ask them to put a photocopy of each page in your chart. You’ll want a copy on hand too when you speak with the doctor.

  When you meet the doctor, offer a handshake, a smile, and a “nice to meet you.” Doctors are human beings and most of them prefer dealing with friendly patients. You want this doctor to want to help you. As chronic illness patients, we have probably seen our fair share of crappy doctors that leave us feeling frustrated and angry. Don’t hold this against your new doctor. Assume he or she will be fabulous, until proven otherwise.

  Doctors usually begin the appointment by asking what’s wrong. This is when you tell them the goal of your visit. Use phrases like, “I’m hoping you can…” or “I would like your help in finding out….” Don’t give orders like, “I need you to…” or “I want you to….” Be deferential to the doctor, without being a pushover or a kiss up. Be focused
and rely on your written questions during the appointment. Don’t say bad things about other doctors or hospitals, even if they were total jerks.

  Whatever you do, don’t bring a giant binder of medical records into the exam room! If you are a chronic illness patient, you probably have a forest worth of trees in paperwork on your prior lab results, doctor’s notes, imaging studies, etc. It’s fine to bring this to your appointment, but you will scare off most doctors if this is the first impression they have of you. Leave the binder in the car or with a friend in the waiting room. If you need to bring it in to the exam room, put it in a backpack so it doesn’t become the elephant in the room as you try to have a focused conversation with your doctor. That binder can very easily be misinterpreted as hypochondriac, attention seeker, or patient that is too complicated to get involved with. If the doctor wants any of your prior medical records, you can find out what they want, and give the relevant documents to their secretary after the appointment to make copies of, or you can offer to fax it to them after your visit.

  As you end your visit, make sure you understand the game plan moving forward. Is the doctor ordering tests or writing a prescription? Where do you go for the tests? Who will get the insurance approval for the tests? How will you get the results? When should you come back for a follow-up?