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Feeling like a Fraud

July 6th, 2018  | Family Stories  |  By BETSY PILON

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My Life as a Fraud

(Posted on behalf of the original author anonymously)

Most of my life I wore my heart on my sleeve. I was an open book and comfortable being authentic. I had two degrees and a successful marketing career. I made friends easily and was blissfully confident in myself and my abilities. I had always worked hard, tried to “do the right thing” and treat others well. Until I became a special needs parent with my second child.

We knew about the severe hydrocephalus before she was born. At six months I worked from home on bed rest after convincing my OBGYN that I was much better off doing my job from bed than consulting with Dr. Google for the final three months of my pregnancy.

We had to deliver her at 37 weeks due to the severity of the hydrocephalus and spent 6 weeks in the NICU. Her hydrocephalus caused some of the bones in her skull to fuse prematurely (craniosynostosis). She endured 4 brain surgeries by the time she was 6 months old. She wore a helmet to help reshape her skull after cranial remodeling surgery.

She had some delays relating to these conditions, but was generally a happy little girl. And at this point, I was still an open book, for the most part.

She was 14 months old when disaster struck. The shunt that drained the fluid off of her brain catastrophically failed, causing a devastating global brain injury. She lost her vision, speech, swallowing and the ability control her body. She spent 4 months between the ICU and a sub-acute facility.

Up to this point, we were a special needs family with “training wheels.” The brain injury was a game changer. The repercussions were astounding. There was nothing in our family’s lives left unaffected.

And that’s where the fraud began…

For the first time in my life, I felt scared, helpless, alone, guilty and lost. But this was my child’s life. I HAD to pull myself together. I HAD to put on the armored suit, brave face and go to battle – a battle of epic proportions. A battle whose many fronts, I could not reveal. As it turned out, the injury was preventable. But the system failed. And as such, not only were there horrendous medical consequences, but legal, financial, professional, emotional and personal ramifications as well. Because of the circumstances, they were all issues about which I was essentially forbidden to speak.

I fought the battles invisibly.

While I was working full time. While our family was falling apart. While I managed her complex care. While I was annihilated financially. While I was knee-capped professionally. While feeling completely inadequate in every way.

I learned how to do many things quietly. My phone was permanently set to vibrate and all but surgically attached to my body. Technology became my best friend. I learned how to do more than 37 things at once. My former boss considered me one of the most productive people she’d ever met, and as a special needs mom herself was one of the very few that I let into my “new life.” She gave me leeway to do what I needed as long as my work got done. She understood why I needed to remain under the radar professionally. I fought what I could during the day, and prepared for the next day’s battles each night.

I found strength in myself that I never imagined that I could possess.

I learned how to fight insurance companies, government agencies, attorneys, school districts, medical providers and personal demons. I learned to stand my ground and voice my opinion. I learned to persevere. I learned how to advocate. I’ve learned so much medicine that was asked by a doctor if I was a doctor. I’ve learned that I can stand on my own. I’ve learned new professional skills by going to school amidst this chaos. I learned that I could maintain a 4.0 grade average. And I learned I could do all of this while fighting two autoimmune diseases of my own.

But I’ve also learned that I must silence myself about most of this.

I’m the breadwinner. I HAVE to support my family. I’ve been laid off three times since the injury. Although by my reputation I am one of the hardest and most capable workers out there, many in the professional and outside worlds would immediately consider me a liability if they knew my circumstances. I cannot speak of the complex project management skills I’ve honed. I cannot speak of the tenacity I possess when facing seemingly insurmountable challenges. I cannot speak of where I gained my medical knowledge when pursuing marketing positions in the medical industry.

I’m now only a shell of my former self and feel like a fraud because of it.

I’ve learned that I must hide the core of my being to avoid discrimination on both professional and personal fronts. It’s why I’ve written this anonymously. I know I’m not the only one out there and that there are others who must silence themselves as well. And I want you to know that you are not alone. And that I’m cheering you on.