hope-shattering conversation with a doctor made me realize that a key part of the Hippocratic oath, “to first do no harm,” can point doctors in the wrong direction and may even encourage some to abandon their patients. The oath is a noble commitment, loaded with good intentions. But it’s crafted from the point of view of people who are healthy. It doesn’t make much sense for people who are sick and suffering.
At age 16, I was struck with chronic fatigue syndrome. I spent years asleep or simply lying on the couch, staring into space. For years I was too foggy and weak to read, to surf the Internet, or to walk to my mailbox.
At age 23, I moved from New Zealand to the United States. With the help of two aunts who lived here, I took advantage of the mighty United States health system to try to wrest my life back from my disease. Thousands of dollars of tests confirmed that I had lupus, but that my central issue was a chronic fatigue syndrome that autoimmune diseases often kick off.
My rheumatologist at the time was young and smart. He tried me on some new medications, but it became clear that they were doing little or nothing to improve my quality of life. Over the next few weeks, I used my small windows of energy to research other possible therapies. Doing that gave me hope, and I looked forward to my next appointment with the rheumatologist.
I took a stimulant in the morning so I could stay awake for the 11 a.m. appointment. After my doctor and I discussed my lack of improvement, I handed him the list of new treatments I wanted to try. He scanned the list, shaking his head. I recall him telling me so clearly, “There is nothing more I can do for you. None of these are FDA-approved for your condition.”
With that sentence, my doctor did more harm to me than any medication, symptom, or side effect had ever done. He gave up on me because he had run through the handful of options that were “approved” to treat my condition. In my mind, his pronouncement told me that I shouldn’t expect anything more from medicine — that my current state was somehow acceptable.
After several days of tears and defeat, I began to realize that I had to treat myself. I started with supplements, undertaking trial-and-error experiments to systematically find ones that worked. Benefits that a healthy person wouldn’t notice meant a lot to me, as I struggled to exist on a fraction of an average person’s physical capacity. Some supplements helped me operate a little more efficiently, giving me perhaps a 2 or 3 percent boost. With that I could stand up for longer and sleep less, which gave me a little more life each day.
I found an integrative doctor who was open to trying off-label medicines. (These are drugs the FDA has approved, but for conditions other than mine.) We found three off-label drugs that made a huge impact on my life. My integrative doctor acted as an intermediary, learning from his other patients — patients like me — as they discovered successful treatment plans. I began to get a feed-forward cycle of recovery in motion. I started doing yoga, walking, and using my brain.
Today I have a great job as a science writer. I rely on a daily cocktail of supplements and off-label medicines to keep a barrier between me and my disease. I take it easy, but I live my life. My colleagues don’t know I was ever sick. I’ve fallen in love with a beautiful person who can barely imagine what my life used to be like.
I know this strategy won’t help everyone get better. There’s no magic off-label pill that can cure everyone’s condition. The point is that it’s an underused resource. When you run out of approved treatments, every chance at getting better is worth it, no matter how long the odds. The only other option is to give up.
I strongly believe we need to embrace off-label and alternative treatments and open pathways for their use, especially for patients without any FDA-approved treatment options. I owe everything to my mixture of medicines, yet there were so many barriers for me to access them.
My journey has also prompted me to make a plea to all physicians: recognize the desperate situation many of your patients are in. Understand that inaction can cause a world of harm. You may not be able to tackle every condition head on. But don’t give up on patients. That should be part of every doctor’s oath.
Juliet Preston is a science writer based in San Diego.