Self-Advocating: I can do it and so can you

 
Cinzia Bishop - Headshot1.jpg
 

The summer of 2016 started off on cloud nine. I had just gotten engaged to my high school sweetheart, recently graduated college and started my dream job. I was happy and healthy. Little did I know, there was something looming beneath the surface. 

One hot July morning, I woke up to see my fiancé sitting on the couch drinking coffee. Only – there were two of him. My vision had doubled. I was seeing two of everything. After a few hours it became clear that this was not going to go away and the search for answers began.

Starting with my primary care, I was shuffled from one appointment and specialist to the next. We started with my eyes and began working backwards toward my brain. As far as the tests were going, there was no reason that I should be experiencing these symptoms.

Almost out of options, the doctors decided to order an MRI. Within a few days I was back at the hospital to review the results. That was the first time I saw my brain and its white patches everywhere – which I later found out were lesions.

After ruling out injury and Lyme Disease, I probably had Multiple Sclerosis (MS). The only way to confirm the diagnosis was by performing a spinal tap. Hopeful that I would finally get an answer, I headed in for the procedure. 

I was met by a neurology resident, not the doctor who had ordered the test. She took me in and did an initial exam, which I passed with flying colors. She then asked how my vision was and I shared that after six long weeks, it had finally returned to normal. This was when she looked at me and asked, “So do you have any other questions?”

Yes! What about the spinal tap? That was why I was there! She apparently did not feel that a spinal tap was necessary. Frustrated, I asked if that meant I had to wait for something else to happen to me – knowing this episode would likely repeat itself. To use her exact words, she looked at me and said, “No, what I am saying is that you are normal. Normal people don’t sit around waiting for bad things to happen to them.”

This was the moment that changed me. This was the moment that I took charge of my health and my life.

Usually, if a doctor told me everything was fine, I believed them. I needed to trust my intuition and challenge this person in a position of “power.” I mustered up the courage, stood up and said, “Well normal people do not have double vision for over six weeks either. So, I suggest you get a second opinion.” 

To my relief, my original neurologist returned and said a spinal tap was needed immediately. One week later, the day after my 24th birthday, I was diagnosed with Relapsing Remitting Multiple Sclerosis.

Luckily, this means that I go through phases of “remission” where my disease activity and symptoms are dormant and it generally does not interfere with my daily life. However, I am always aware that the reality of this disease is that at any time things could change and my life could look very different.

Only one year later, I lost feeling in half of my body. My muscles continue to weaken. My energy is at an all-time low. Despite these challenges, being armed with a diagnosis meant that I could begin my fight. With a name to call this disease, I could meet others like me and start working toward a brighter future.

So to all you warriors out there fighting, whatever your fight may be – BE YOUR OWN ADVOCATE. 


 

Cinzia Bishop was born in South Africa but raised in Boston where she still resides today. She is a passionate and tireless advocate, raising awareness and funds for Multiple Sclerosis research after being diagnosed in 2016. She is an accountant within the fast-paced construction industry and doesn’t let her diagnosis slow her down. Follow her journey on Instagram @treatmenttuesdays.

 
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Gaining My Rare Disease Independence