The invisible illness doctors denied

Up until the year 2014, Chronic Lyme Disease (as well as normal Lyme Disease) was regularly denied by doctors in Canada. As the disease had not been present in the country for a while, doctors would diagnose a million different reasons for the symptoms, but wouldn’t consider the illness. As ticks carrying the disease started to appear throughout the country, they chose not to test them. Some are still denying the existence of the illness.

A big part of the problem that arises from this denial, even when doctors are starting to acknowledge it’s existence, is that treatment for it does not exist in Canada. Because it does not exist here, OHIP and extended health benefits programs do not cover the treatment.

Just a couple of weeks ago, I had the opportunity to sit down with a young lady who is trying to raise funds for treatment for herself and her mother, all the while raising awareness for Chronic Lyme Disease in Canada.

Like most of the invisible illnesses that exist today, it has not been an easy road, leaving Noelle being treated as if she is making things up, or not really sick. While I will be writing an article about this inspiring young lady, I also wanted to provide her with the chance to share her story. So today’s post is just that.

Screen Shot 2015-10-30 at 2.19.44 PMMy name is Noelle, and I am 20 years old. I am here today to share my story, my journey, of lyme disease.

I [became] sick 5 years ago, sick to the point that it was completely debilitating, sick to the point where it took over my life. Before I was sick, I was very athletic. In middle school I was on all of the sports teams. I excelled in soccer, and also played the sport competitively outside of school.

When I went to high school, I became very stressed out. Like many I felt the need to fit in, experimenting with diets, etc. When I started getting sick, I knew it couldn’t be just stress causing it, even through when I went to my doctors they kept telling me that it was. I had extreme migraines, and aches and pains everywhere, including in my teeth. I started developing light sensitivity; it hurt for me to even look into the sunlight.

I started experiencing chronic fatigue, and often couldn’t get out of bed. My brain felt like it was full of fog — I could not think straight and I had trouble understanding people. My memory was horrible; I would lose everything. I could not even force myself to go to the gym or soccer practice.

I had lost myself.

According to my doctor, I was fine and all I needed was to be medicated for an under-active thyroid. I would not settle. This was not all in my head like my doctor was implying.

Many of my loved ones wanted to believe that I was still the athlete, still the go-getter that they knew. I wanted to believe that too. But there came a time when I had to stop ignoring reality and face my fear.

I Googled doctors and called one with good reviews that practiced holistic medicine, and was put on a six month waiting list. Three months later I got a call from the receptionist. I was the 6th person they had called for an open appointment, and the first one who answered the phone.

When I saw this doctor, he ran a bunch of tests on me. The CD57 test was the test he was most concerned with. My CD57 was extremely low — the healthy number is over 100, and mine was 36. From there, I was diagnosed with Chronic Lyme Disease. The doctor told me that this disease was neither treated nor tested in Canada. Lyme Disease is now, but not Chronic Lyme Disease.

I was scared, and I didn’t know what to think. But deep down, I believed that this was the answer to my mystery.

My nightmare, however, was far from over. Chronic Lyme Disease involved me going to the United States for Treatment — money that neither myself nor my parents had. And I still had to convince people that I had Chronic Lyme Disease.

The obstacles did not stop there. My mom (who is one of my best friends) is on disability and has been sick for a long time. She was diagnosed with rheumatoid arthritis, Fibromyalgia, Chronic Fatigue Syndrome, depression and many more. She was given more and more prescriptions to help her symptoms, but ultimately they made her worse. The more I learned about Chronic Lyme Disease, the more I began to connect the dots with her.

I got my mom tested for Chronic Lyme Disease. Based on her clinical symptoms and the lab results, she tested positive. Like me, she would have to start her fight.

We both go to a doctor in New York and are treating this disease with antibiotics and herbs. Many days are hard and we are faced with symptoms that are completely debilitating to us. I work at a natural/whole foods store where I live, and it’s a great job. Each day has it’s challenges, but I pray to get through because I need the money for treatment.

Myself and my mom need to go to the Sponaugle Wellness Institute in Florida because the current treatment is not working to put us into remission. It will be $75,000 for both of us. I will not go for the treatment without my mom, even though she wants me to.

For anyone fighting an invisible disease, never give up. Always believe in yourself, even when no-one else will. It is the biggest challenge, and not everyone will understand, but being vulnerable is the only way you will find those that do. Giving up is not an option.

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When I left my interview with Noelle and her boyfriend Shaun, I was fighting back tears — tears of sadness at hearing the echoes of a story so familiar to me regarding the battle against invisible illnesses, and tears of joy at someone who is so passionate about fighting for change against the stigma and against the things that are trying to drag her down in life.

At 20 years old, this young woman has far from given up. Along with starting a GoFundMe Campaign to help raise the funds necessary for she and her mother to receive treatment, Noelle and Shaun have also begun planning a 5K run to raise funds for their treatment and awareness about Lyme Disease.

She describes her boyfriend as one of her biggest supports, someone who has helped push her forward to fight against this, speak out and do something.

Earlier today, I read a post from a woman I am just getting to know about her story about getting her ass kicked by life, and being a badass woman in today’s society. She describes badass as being vulnerable, and vulnerable as being brave. If I could sum up what I learned about Noelle during that 45 minute coffee meeting, it is that she is badass in leaps and bounds. I have no doubt in my mind that this girl is going to create ripples and change lives.

One thought on “The invisible illness doctors denied

  1. Oh this is just utterly heartbreaking!! What a horrible and debilitating disease that needs to be treated! I am just so sorry for both Noelle and her mom. I can’t imagine the hardships they have faced and continue to face in the path to healing. I will be praying for them both to get the treatment they need and deserve. Sharing this story- it needs to be known. Thank you for sharing their difficult journey with us, Tabitha.

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