This is part six of Autumn’s story. The rest of her story can be found here:
Not only was the allergist appointment disappointing in that it didn’t resolve anything but it was also detrimental in a couple of ways. First, the allergist’s recommendation to cancel the GI consultation would delay the diagnosis. Then his prognosis that Autumn’s son had no allergies would negatively impact all subsequent doctor visits. Now when specialists (or anybody for that matter) asked if her son had allergies, Autumn’s answer would be ‘no.’ This meant they had to find other reasons for her son’s issues. So the spiral of misdiagnosis would continue.
Ironically, it was only AFTER Autumn received her son’s diagnosis that she realized the allergist was wrong and she was right! It turns out all her concerns were valid, her son’s issues weren’t typical and she wasn’t a hypochondriac.
What do you do when the diagnosis doesn’t match the symptoms?
But what do you do if you are in Autumn’s shoes currently?
What happens when the diagnosis isn’t making sense and isn’t matching up with the symptoms?
Or when your intuition tells you something doesn’t feel right and your doubts don’t go away?
- First, don’t ignore that feeling.
- Second, don’t be afraid to speak up.
The Importance of your voice
One of the lessons Autumn has learned is the importance of making your voice heard and your concerns addressed.
She’s learned the hard way that ignoring doubts can lead to delays in getting a diagnosis and also runs the risk of getting misdiagnosed. Her son had to go through an additional year of pain and unnecessary therapy because she didn’t know how to use her voice.
Coincidentally, she was also witnessing family and friends going through the same struggle of not being heard by their doctors. She saw life-threatening illnesses being diagnosed too late. She heard about unnecessary surgeries and treatments due to misdiagnoses. All because no one was listening.
How to make your voice heard
So Autumn made the decision to make sure her concerns don’t ever get pushed aside again. And she does that by employing the prove me wrong method. It’s not a name for an actual method, rather it’s her mindset or her slogan when she expresses worries doctors aren’t valuing.
Essentially it means before a doctor can dismiss her issues, they need to prove she is wrong, and that her concerns aren’t warranted. She also asks to know every prognosis, no matter how rare. She’s learned most of her son’s conditions are NOT typical. In fact, she asks the doctors to start with the rare conditions first and THEN work down to the more common ones. Using the medical expression, she asks them to think zebras before horses. As parents of uniquely abled children, odds are we’re dealing with zebras more than horses.
We live with the consequences
Ultimately, Autumn realized they were the ones who had to live with the outcome, not the doctor. And life is too short and precious to give up on ourselves or our children’s health since it’s vital to the quality and enjoyment of our lives.
Of course, this is what Autumn learned in hindsight. Back then, she had to live through the repercussions of the misdiagnosis and figure out why her son wasn’t interested in eating food.