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When You're the Only Person on Your Chronic Illness Team

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We have all heard the phrase “there is no I in team,” but what people don’t tell you is that sometimes it really is just you on your team. When friends, family and doctors are not on your side, then you must learn to navigate these deep waters, and learn to stand up for yourself and what you believe. You must exhaustingly paddle by yourself and fight to keep your boat afloat to make it to your next destination. There were many times that I would be sitting in doctors offices or even just talking with people who obviously were skeptical and not in my corner. Therefore, I was the only “I” on my very own Lyme disease team.

It was like something you would see in a teary, sappy movie. The kind of movie you watch in bed while encapsulated in your fluffy, warm blanket while eating your favorite pint of ice cream and using a box of tissues as an arm rest. I’ve been trying to find the right medical professionals to help me achieve remission from Lyme. You are probably wondering “So what exactly happened?” I will spare the exact names and details but here we go!

Recently I had another doctor try to tell me I did not have Lyme disease. I was infuriated. Years ago I probably would have just sat in that drab doctor’s office and taken that verbal discredit of my journey and sorrows. My husband and I were trying to explain our circumstances and my husband even stepped in, standing up for me. I love this man and bless his heart, he has always been on my side regarding my illness and has never once doubted my pain, illness or intentions. We were so fed up and our emotions took over — yes, we both ended up teary-eyed and red-faced with disappointment.

But can you blame all these doctors? Yes and no. Many have tried to help with little or no luck. In my experience, 99.9 percent of doctors are not educated enough about Lyme disease to understand the true effects it has on the infected. A young, vibrant and healthy-appearing woman is sitting in front of them but is so sick, and they are utterly perplexed by this disease known as “the great imitator” and the “invisible illness.” Some are so dumbfounded that they begin to doubt me as a person, patient and as a fighter because they can no longer help due to their lack of experience and knowledge. The CDC has not been putting enough funds towards Lyme disease research, and the testing and treatments they list are outrageously outdated.

It can be lonely to be the only “I” on your own “team.” And if we are lucky, there are those few amazing people by our sides. Either way, you fight for what you know and what you believe. I believe one day my Lyme disease will be in remission and I’m thankful I know that these past 49 doctors I have seen are not the people who will be added to my team. 

One day I believe I will be healthy and pain-free again and will have the utmost appreciation for the family members, friends and doctors that had the intelligence, compassion and patience to join me on this journey. Lyme disease can be so devastating and depressing because of its vicious attack on our bodies. It will try to tear you apart from everything in your life — including your own soul. But I decided a long time ago that no matter what, I would be my own advocate in my health and entire life. I refuse to have any more doctors tell me that my life will be this way forever. They are not God and they do not choose my fate and destiny. One way or another, I will create the best possible life I can have while facing this disease and its accompanying chronic illnesses. I will start building up my foundation with the bricks that were thrown at me and deciphering my true teammates.

What I have realized is that when one door slams shut, another will fly open, exposing the light that outshines these misfortunes and brings back the hope in your eyes.

No matter what your relationship or connection to anyone is, whether it’s a family member, friends, boss, coworkers or doctor, stand up for yourself and what you believe in. Do not succumb to someone else’s ill intentions. You choose your fate and destiny.

Above all, please remember that you are worth the fight and that you deserve the best life you can make for yourself.

Originally published: September 9, 2016
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