Dr. Tara Narula writes a women’s health column for TODAY.com. She is an NBC News medical correspondent, a TODAY.com contributor and an associate professor of cardiology at the 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 flashing in the corner of my right eye. At first I wasn’t sure what was happening, but I knew something was wrong.
When I returned home to Miami for Christmas vacation, I told my family about my symptoms and saw an ophthalmologist. He didn’t notice any problems other than a small hemorrhage at the back of my eye and recommended I see a retina specialist.
The retina specialist’s tests revealed no problems with my retina and the doctor sent me to a neuro-ophthalmologist to examine the nerves in my eye. This 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 that the test was abnormal. There was a whole series of flashing lights that I had missed. He explained to me that I had a visual field loss called an inferior arcuate defect in my right eye, which meant that the vision in the lower part of my right eye was gone permanently. Hearing this news early in my medical career scared me and I feared the worst.
I asked what the cause was, and he said it could be due to several things, including multiple sclerosis (MS). Some women with MS experience optic neuritis, an inflammation of the optic nerve, and lose some of their vision. He recommended that I have an MRI of my brain and spine and continue 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 someone hitting my eye with their elbow while I was out with friends one night.
Facing the unknown
Being told something was wrong was hard enough, but the hardest part was not having a real diagnosis or answer to what had happened to me. Additionally, not knowing if it might happen again or if my vision would continue to decline was one of the hardest things I had to deal with. It’s difficult to exist in that gray area, where there are some answers but no complete picture. After returning to medical school, I felt petrified and found myself thinking about what-ifs. What if things get worse? Will I be able to graduate from medical school and become a doctor?
Fortunately, my brain and spine MRI showed no MS lesions. Back at the University of Southern California medical school, I saw another neuro-ophthalmologist for a second opinion. This doctor had no more answers to give me than the first specialist.
Two world-renowned experts told me they weren’t sure of the underlying cause of my vision loss. I tried to concentrate on my medical studies, but my stress increased. When I worried about my future, my mother said words to me that I have never forgotten. She said if I spent too much time worrying about this could that would happen, I wouldn’t enjoy the life that was event. She then sent me a little 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 mentality.
Plus, a book by journalist Richard M. Cohen – “Blindside: Lifting a Life Above Illness: A Reluctant Memoir” – about his experiences being diagnosed with MS, being legally blind and having brain cancer colon taught me to trace this path 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, to control what we can, and to let go of what we don’t. can’t.
Over the past two decades, my vision loss has never worsened and I have not been diagnosed with MS. In fact, several years later, I received another expert opinion from a New York City doctor, who suspected that my severe myopia had distorted my eye, causing vision loss.
Every time I have my annual visual field test, I always worry. Every day, I realize in an instant that I could become a patient again. Having experienced my own journey always reminds me that behind the medical file number, the image and the file of each patient is a human being who is afraid and struggling to find the path to hope and a new normal. . When one of my patients has a test or 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 is not black and white. Sometimes you see three different doctors and get three different opinions because some diagnoses are elusive or don’t have a clear answer. I know how frustrating and scary it is to not have a definitive diagnosis or to know what will happen. Being patient has taught me the importance of advocating for your health.
How to defend your health
Here are my best tips for standing up for your health, especially as a woman.
Keep an open mind
When something is difficult to diagnose, getting multiple opinions can be helpful. After receiving several opinions on my vision, I am not attached to a particular diagnosis. My mind is open to the idea that it might be worth seeing another doctor and getting another opinion.
Keep records
I recommend that patients suffering from medical mysteries keep a diary of their symptoms including all test results and a timeline. This way, when they search for answers, they can provide the new doctor with a comprehensive overview of their condition, which could make it easier to make a diagnosis.
I also encourage patients to request copies of all their tests, including MRIs, CT scans, blood tests, etc. This way, they have all the relevant information needed about their health and can share it with providers instead of waiting for a doctor’s office. send the results.
Find help
Seeking support from friends and family can help patients cope with difficult emotions related to a difficult-to-diagnose illness. Consider asking a loved one to attend doctor visits with you, as they may remember details you have forgotten and what the doctor tells you in more detail.
Always believe what you feel
It is essential that women learn to express what they feel. Women know their bodies and know when something is wrong. I advise my patients to trust their instincts when something is wrong and not let others minimize it. In many cases, advocating for health begins with believing in one’s own experience.
Find a doctor you are comfortable with
You and your doctor must 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’s a better fit for you.
It’s easy to feel overwhelmed by the healthcare system and wonder how to overcome a health challenge. But the advice my mother gave me in 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.