How to Cope With a Medical Misdiagnosis

Source: Kristin Meekhof

As an author of a book about grief and loss, I've listened to hundreds of stories from people about losing their loved ones to a medical misdiagnosis. Personally, I experienced my own astonishing situation in 2007 when my husband was diagnosed with bronchitis, only to be told a handful of weeks later it was advanced cancer. He died less than 10 weeks after his first visit with his primary care physician's office. I know I'm not the only person to try to cope with unimaginable loss and fear following in the wake of a loved one's death due to a medical error.

According to a 2019 Johns Hopkins Medicine Newsroom piece, a misdiagnosis is not unusual. The piece says, "While estimates vary, likely more than 100,000 Americans die or are permanently disabled each year due to medical diagnoses that initially miss conditions or are wrong or delayed."

As a mental health expert, I'm aware the path for emotional healing after a misdiagnosis happens is often filled with anger, disappointment, sorrow, pain, guilt, disbelief, and other difficult feelings. Specifically, in doing research for my book, I heard women voice their confusion over how a trusted physician could make such a significant error resulting in their spouse or partner's death. It wouldn't be unusual for the woman to ask me how I coped with this experience and how I forgave myself for the situation.

Thousands of women told me they feel an element of guilt. They often believe they missed a key symptom of their loved one's condition that could have saved their life. This belief leaves them feeling responsible, even for a small part, of the outcome. The women often wonder if they were a stronger advocate, did more research, or sought multiple medical opinions, the outcome would be different.

Emotional healing after a medical misdiagnosis is important. Here are five things to consider.

1. Understand your anger is legitimate and your fear is real. As a patient, a part of you trusted a doctor to make an accurate diagnosis, so when a misdiagnosis occurs, you may feel your trust was violated. And all sorts of emotions, like anger and fear, emerge. These are real and valid feelings.

2. Understand you may be experiencing trauma. The brain and body tend to process a traumatic event differently than a pleasant, cheerful experience. Your body may feel tense, or you might find it difficult to recall a simple fact. For example, when I was with my (now late) mother in a hospital room (years ago), I saw my mother suffer a medical emergency. My mind was trying to literally process all that was happening. When a nurse asked me what occurred, I started crying and could barely speak. Also, witnessing a loss and change in a loved one's medical condition can be traumatic.

3. Use numbers to describe the physical and emotional pain. Using numbers (on a scale of 1 to 10, for example) to describe your pain or your loved one’s pain can better help you to communicate with a medical team. Also write down the numbers, even if it is in a text or email to yourself. Then, you can compare the pain levels from hour to hour or as needed. And be sure to do a self-check-in with your own emotional pain using the same number system. If you notice you’re at a “10,” it may be time to take a moment’s break, even if it is to use the restroom to do a ‘mini rest.'

4. Seek professional guidance. Don’t shy away from scheduling an appointment with a licensed mental health professional, including a therapist or medical doctor. It may be helpful to schedule set appointment times each week, so you know you can rely on these sessions to process difficult emotions. It is still important to speak with a doctor about any physical problems you are experiencing, including panic attacks, because stress can create other physical problems. While you may feel embarrassed to go to your doctor, it is important to remember that medicine does have a significant place in healing.

5. Give yourself grace. While looking at your situation in retrospect, now is not the time to beat yourself up with critical thoughts. Extending compassion to yourself is not narcissistic; it is kind. Your inner voice can create a list of things you could have done, should have done, or wish you had done, or it can create a list of ways to treat yourself with kindness. Mistakes happen and you can demote yourself or you can give yourself grace. When in doubt, extend grace to yourself.

When we experience deep loss, it can take years to discover all that is gone. And processing one due to a medical misdiagnosis can be wrought with anxiety and guilt. Although healing emotional pain often begins in great fear, it is possible.

To find a therapist, please visit the Psychology Today Therapy Directory.