Dr. Tara Narula writes a column on women’s health for TODAY.com. She is an NBC news medical correspondent, TODAY.com contributor, and associate professor of cardiology at Donald and Barbara Zucker School of Medicine at Hofstra/Northwell.
While sitting in the lecture hall during my second year of medical school, I noticed colored lights flashed in the corner of my right eye. At first, I wasn’t sure what was happening, but I knew something wasn’t right.
When I returned home to Miami for Christmas break, I told my family about my symptoms and visited an ophthalmologist. He didn’t notice any problems, other than a small hemorrhage in the back of my eye and recommended I visit a retina specialist.
The retina specialist’s tests did not reveal any problems with my retina, and the doctor sent me to see a neuro-ophthalmologist to examine the nerves of my eye. That doctor ordered more scans and a visual field test, where I was asked to press a button every time I saw a small flash of light.
After the test, the doctor informed me the test was abnormal. There were a whole series of flashing lights I had missed. He explained I had a visual field loss called an inferior arcuate defect in my right eye, which meant the vision in the bottom portion of my right was permanently gone. Getting this news at the start of my medical career scared me and I feared the absolute worst.
I asked what caused it, and he said it could be several things, including multiple sclerosis (MS). Some women with MS experience optic neuritis, an inflammation of the optic nerve, and they lose some of their vision. He recommended I undergo a brain and spine MRI and continue with annual brain MRIs for the next five years to see if any of the lesions associated with MS developed.
He also suggested two different diagnoses: I could have had a small stroke that affected my eye or it was related to being bumped in the eye by someone’s elbow while out with friends one night.
Dealing with the unknown
Being told something was wrong was difficult enough, but the hardest part was not having a real diagnosis or answer for what had happened to me. In addition, not knowing if it might happen again or if my vision might continue to decline was one of the hardest things I've had to face. It’s challenging to exist in that gray area, where there are some answers but a complete picture doesn’t exist. After returning to medical school, I felt petrified and found myself dwelling on what-ifs. What if things get worse? Will I be able to graduate from medical school and be a doctor?
Luckily, my brain and spine MRI didn’t show any MS lesions. Back at medical school at the University of Southern California, I visited another neuro-ophthalmologist for a second opinion. That doctor had no more answers for me than the first specialist.
I had two world class experts telling me they were not sure about the underlying cause of my vision loss. I tried to focus on medical school, but my stress increased. As I fretted about my future, my mom told me words I have never forgotten. She said that if I spend too much time worrying about what could happen, I wouldn’t enjoy the life that was happening. She then sent me a small note quoting the prayer she always said: “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” She changed my mindset.
What’s more, a book by journalist Richard M. Cohen — “Blindsided: Lifting a Life Above Illness: A Reluctant Memoir” — about his experience being diagnosed with MS, being legally blind and having colon cancer taught me how to chart this course into the unknown. Cohen’s book showed me that we don’t have control over what happens to us medically, but we all have the power to handle it with grace, control what we can and let go of what we cannot.
Over the last two decades, my vision loss never worsened and I was not diagnosed with MS. In fact, several years go, I received yet another expert opinion from a New York City doctor, who suspected my severe nearsightedness had misshaped my eye, causing the visual loss.
Every time I go for my annual visual field test, I still worry. Every day, I realize in an instant I could once again be a patient. Having been through my own journey always reminds me that behind every patient’s medical record number, image and chart is a human being who is scared and struggling to find their way to hope and a new normal. When one of my patients undergoes a test or a scan, I always make sure that my staff or I respond quickly because I don’t want to leave them waiting and wondering.
It is important for patients to understand that sometimes medicine isn’t black and white. Sometimes you visit three different doctors and get three different opinions because some diagnoses are elusive or don’t have a clear-cut answer. I know how frustrating and frightening it is not to have a definitive diagnosis or know what will happen. Being a patient taught me the importance of advocating for your health.
How to advocate for your health
Here are my top tips to advocate for your health, especially as a woman.
Keep an open mind
When something is tricky to diagnose, getting multiple opinions can be helpful. After receiving multiple opinions about my eyesight, I’m not attached to one particular diagnosis. My mind is open to the idea that it could be worth seeing another doctor and getting another opinion.
Keep records
I recommend that patients with medical mysteries keep a journal of their symptoms that includes all test results and a timeline. That way when they are seeking answers, they can provide the new doctor with a comprehensive overview of their condition, which could make it easier to find a diagnosis.
I also encourage patients to ask for copies of all their tests, including MRIs, CT scans, bloodwork, etc. That way, they have all the relevant information needed about their health and can share them with providers instead of waiting for a doctor’s office to send the results.
Find support
Asking for support from friends and family can help patients grapple with the tough emotions of a difficult-to-diagnose condition. Consider asking a loved one to attend doctors' visits with you, because they may remember details that you forget and what the doctor tells you in greater detail.
Always believe what you are feeling
It is critical for women to learn to voice what they feel. Women know their bodies and when something is wrong. I advise my female patients to trust their instincts when something feels off, and don't let others downplay it. Advocating for health starts, in many cases, with believing in your own experience.
Find a doctor you’re comfortable with
You and your doctor should have a relationship based on informed consent. If you don’t feel comfortable with your doctor or feel like you’re being heard, look for someone who is a better fit.
It’s easy to feel overwhelmed in the health care system and wonder how you can possibly navigate a health challenge. But my mother’s advice to me from medical school still rings true: If you put one foot in front of the other and don’t look too far ahead, you’ll realize months have passed. Take it one day at a time.