Since my misdiagnosis, I’ve told the story many times. The surgery, the tests, the conversations with doctors, in particular the arrogant one, and getting the results of my third opinion. Often I am asked, "How did you know you didn’t really have cancer?"
I just did.
There were so many disconnects! I was told, most defiantly, "Two labs have determined your diagnosis. You have a rare, aggressive lymphoma, and you will die within six months without chemo".
But then my intuition kicked in. That little voice inside me represented a chasm between what I "knew," and what I was being told.
We all have that inner voice – intuition, instinct – call it what you will. Frequently I hear from other patients about their frustrating attempts to key in on a diagnosis, their possible dismissal by a doctor saying "it's all in your head," or their feeling that for any number of reasons, they just don't have the right diagnosis. Their frustrations are often triggered by their inner voices.
Other patients "hear" an inner voice, but it's not that they think something is wrong. It's that they don't like what they've heard. They find it difficult to distinguish intuition from wishful thinking. We all wish a frightening diagnosis would be incorrect!
But there is a way to use intuition, and to make sure it's not just wishful thinking. Here are some steps to take to help you distinguish between the two, and improve your outcome:
Recognize it:
With or without blatant symptoms, you may have a "feeling" there is something wrong with your body. Perhaps your doctor has provided a diagnosis and suggested treatment, and you just "know" something isn’t right. Maybe your doctor is telling you there's nothing wrong, but you are afraid she is wrong. The temptation may be to ignore the feeling because it’s not obvious enough, or because you are in denial. The feeling may be one of fear, or you’ll feel yourself trying to push it away. Just knowing it's there can get you started in this process.
Acknowledge it:
Now try listening to your inner voice. Write down your experience, both physical and emotional. Track anything that triggers it. Share your suspicions with loved ones or your advocate. Ask them to help you quantify your feelings even more. Let them ask you questions, or play devil's advocate. Write down anything you can describe that helps you hone in more on what your feelings are telling you. Even writing down questions can create good clues.
The more you can quantify and describe what that voice inside you is telling you, and the more accurate you can be, the less of a "feeling" it will be, because it will be better represented by written evidence.
Act on it:
Now begin your research. Review symptoms, conditions or diseases that reflect your notes and evidence. Learn what you can - but don't draw conclusions. Conclusions are what you develop in partnership with your doctor who has the training and experience you don't have. Conclusions create a real diagnosis, and you are not a diagnostician.
If you have already been diagnosed, but that disconnect seems to exist through your intuition, then seek a second opinion. Using the evidence you created, find others who have similar symptoms or diagnoses and interview them to see what parallels may, or may not, exist. This will help you find clues about the accuracy of your diagnosis.
Missed diagnoses, and misdiagnoses happen everyday. When your inner voice speaks to you, you owe it to yourself to pursue further answers. You need the peace of mind you'll gain knowing you have overturned all the possibilities and you aren't just relying on wishful thinking. Had I not listened to my inner voice, I would have suffered through chemotherapy. Don't ignore your own intuition at the expense of your ongoing health.