6 steps to getting the help you need when your healthcare providers seem to be ignoring you.
You’ve started seeing a doctor to address a growing list of very uncomfortable symptoms. The doctor examines you and orders some tests. When you return for your next appointment, the doctor says, “Your tests came back fine; let’s run some more.” Then over the following months, there are more doctor visits and more tests without notable results and with nothing conclusive. You start to doubt yourself. You begin to wonder if it’s all in your head—except that your symptoms persist. Deep down inside, you know that something is wrong.
Before I was diagnosed with celiac disease and an adrenal disorder, my doctors kept assuring me that I was perfectly fine. Over the course of a year, a slew of medical tests had spotted nothing amiss.
“So why do I still feel sick?” I asked.
“We’re doing everything we can,” they told me.
I was frustrated and exhausted and my medical expenses were getting out of control. Does this sound familiar?
Here’s the advice that turned the corner for me. I wouldn’t be alive today if I hadn’t taken the following steps.
1. Listen to your body.
You know yourself better than any doctor. Learn to pay careful attention to your body and to your symptoms. Take daily notes, keeping close track of what you eat, how you sleep, your energy levels during the day, your fluctuating moods, your toilet habits, your pain and other symptoms. An organized, detailed log of symptoms can help you and your doctor spot any overarching patterns that may provide clues and point to triggers.
2. Be your own advocate.
Take primary responsibility for your own health. Actively work with your doctor as a co-partner. This includes doing your own research related to your symptoms. Few doctors are going to be as keenly interested in your health problems as you are or have the driving impetus and the time to read and learn everything they can about your symptoms.
When researching, be sure to stick to well-respected medical websites, such as Medscape and Mayo Clinic. Most doctors appreciate solid, well-researched information and they’ll readily incorporate it into their knowledge base as they treat you.
But not always. Years ago, my doctor thought I had irritable bowel syndrome and ADHD. I was skeptical, so I did some research on my own. What did it point to? Celiac disease. What did my doctor never test for? Celiac disease. If you have a strong hunch about something and the information on well-respected medical sites backs you up, share that research with your doctor. If he declines to consider it, ask him to explain his reluctance. If you end up feeling that you’re fighting your doctor’s ego, find a new doctor.
3. Ask questions.
Understand the direction your doctor is going and the purpose for each test that’s ordered. What does your doctor suspect is the reason behind your symptoms? What tests will she order? What potential disorders are the tests looking for or ruling out? Be certain you’re in agreement with the plan. You don’t want to see a lot of medical bills racked up for tests that get you nowhere.
4. Ask for a second opinion.
If you feel that you’re not being heard, find a doctor who will listen to you. Many doctors have so many patients and so little time, that it makes it hard for them to focus on you. This is particularly true when you’re a multi-symptom patient with complicated medical issues.
Tell your doctor that you’d like to get a second opinion. Ask to be referred to a medical specialist in the community. Most doctors will appreciate this straightforward approach, especially when they recognize they haven’t been able to help you.
5. Get into a university hospital system.
Ask for a referral to the university hospital system in your region. This is my most important tip and I can attest it works, based on personal experience.
When I was 13 years old, the best doctors in my area tried to figure out why I couldn’t walk or talk properly. Day after day, they examined me and ran tests, only to come up with nothing. These physicians were in busy private practices where they saw hundreds of patients each week, and they just didn’t have the time to properly focus on my case. Finally, I was referred to a medical university system where a medical student dedicated his full attention to my case. Ultimately, he saved my life by discovering I had a life-threatening adrenal disorder.
Medical universities have teaching hospitals where a large medical team (doctors, medical students, residents, fellows, nurses) attends to patients. With the most up-to-date knowledge in the medical community, these institutions can offer a fresh, innovative perspective on your case. A team of specialists—in neurology, cardiology, endocrinology, gastroenterology, infectious diseases and much more—are usually available for consultation, and complex cases can get the attention they deserve.
Finding a university hospital is easy but obtaining a first appointment with a specialist may take some time. Again, getting a referral from your primary doctor can help.
6. Don’t give up!
If you still haven’t received the help you need, look outside your community. Do your research and find the leading medical center with an excellent reputation for specializing in your problem. This may take traveling out of state or across the country—but pursue the answers you need to regain your health.
Contributor Taylor Miller (@GlutenAway) blogs at glutenawayblog.com.