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When People Respond to Your Diagnosis With Disbelief and Denial

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“I just have bad hips; I’ve had three surgeries but things are mostly under control,” I respond when a new coworker asks about the grimace on my face as I get up from my desk. I am most often then pummeled by a response of overwhelming shock and disbelief. Why? Well, I am only 23 years old and most people under the age of 50 don’t have much to worry about when it comes to their hips. Not me.

I have struggled with hip pain since I was 14. After spending four years in search of a diagnosis and an explanation for my excruciating pain, I got one: femoral acetabular impingement (FAI). I have since been officially diagnosed with FAI in both hips, three labral tears on the left side, two on the right, chronic trochanter bursitis and hip flexor tendonitis. FAI is a birth defect in which damage is caused to the hip joint because the femoral head and acetabulum rub abnormally causing intense friction. There are two types of FAI, cam and pincer types, and I have both.

FAI is associated with:

  • Cartilage damage
  • Labral tears
  • Early arthritis
  • Hyperlaxity
  • Sports hernias
  • Lower back pain
  • And much more

For reference, I have danced since the age of 3 and participated in a variety of sports over the years. The pain began during a dance workshop my sophomore year of high school. The four years I spent searching for a diagnosis were brutal and contributed to my struggles with mental illness. I saw a variety of specialists and doctors who all told me in varying degrees that they couldn’t find anything wrong, and in most cases, they told me they didn’t believe me. Disbelief plagued my life.

Fast forward nine years. I have had three surgeries to fix the impingement, repair and clean up damage the FAI caused. I have three labral tears on my left side and two on my right. Surgery number one was on my left hip in December 2011, my freshman year of college. Surgery two was the left hip again in June of 2014. My most recent surgery was in June of 2015 on my right hip. I have early signs of arthritis and have since been diagnosed by my doctor with chronic pain.

After my surgeries, I had foolishly assumed that since there was concrete evidence of injury and pain, I would no longer be plagued by the disbelief of others when I shared my story. Unfortunately, I was wrong.

Disbelief and denial are reactions I know many with chronic pain, mental illness and other invisible diagnoses are used to. I have browsed online forums, talked to others and tried to find resources to see how others cope with disbelief and shock in response to their stories.

What I find most helpful in these situations is having a mantra I can repeat in my head. Mine is: You have FAI and your pain is real and valid. The goal here is simply to remind yourself that others cannot invalidate your pain. You are the one living in your body and experiencing these symptoms; no one else can tell you you’re not experiencing them. Your experience is 100 percent real and valid.

Disbelief is a tough response, but staying grounded and connected to my experience has helped ease the sting of the response.

Other tactics I find helpful:

  • Deflecting with jokes (a personal favorite of mine – I tend to go for Grandma jokes about life alert products)
  • Providing education about your diagnosis
  • Using metaphors and other language to try and convey your personal experience
  • Walking away from the situation or changing the topic
  • Using self-soothing techniques to combat any anxiety during or after the conversation

Just remember that no matter the response you may get from others when you disclose a diagnosis or struggle, you are the one who gets to control the conversation. It’s your story, your diagnosis, your pain. It is no one else’s, so do not let anyone write your story. Choose your own narrative.

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Originally published: November 4, 2016
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