Since the beginning of my illness, I have always chosen to be very open about sharing my experiences with others. Somehow I felt that the burden to hold in “the truth,” was more painstaking than being honest about what was going on in my body. The full severity of my illness was probably only known to my family and close friends, but I was happy to share my story with anyone who asked. I believe, like the above quote states, that others can find meaning in my personal story. Below are the 5 reasons why I chose to and continue to choose to remain open about my health struggles:
1. Chronic Lyme Disease is called the “great imitator” for it’s ability to mimic other illnesses.
Patients are often misdiagnosed with conditions such as MS, Chronic Fatigue Syndrome, Fibromyalgia, ALS and Parkinson’s. Treatments aimed at these other diseases, generally do not yield much improvement for patients when the root cause is in fact, an underlying infection from the Borrelia bacteria or one of it’s pesky co-infections. I had been diagnosed with a list of ailments including Interstitial Cystitis, Pelvic Floor Dysfunction, Chronic Pelvic Pain, Adrenal Fatigue Syndrome, Hypothyroidism, Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity Syndrome –ALL of which can be symptoms of Lyme Disease. Many will remain undiagnosed unless enough awareness is raised for the idea that these other “illnesses” may instead be symptoms of Chronic Lyme Disease.
2. The profound fatigue, pain and neurological issues that often accompany Lyme sufferers is very isolating.
We are often forced to quit our job and stop participating in social or leisure activities. Many of us become housebound and bedridden for significant periods of our illness. I persevere in telling my Lyme story in the hopes that those struggling the most will read it and feel encouraged that improvement can come no matter how desperate the circumstance may seem.
3. Lyme Disease is not well-known, well-researched or well-respected in the medical community.
By speaking and writing about Lyme Disease, I am able to contribute to the grassroots efforts of fellow Lyme sufferers to increase the understanding of this illness. The more information available to patients, the public and the medical community, the more people will notice that this is a real and disabling health crisis in our country today.
4. I have found strength in numbers.
Through attending support groups, uploading photos on Instagram, posting my status on Facebook and Twitter and blogging, I have been able to connect with so many wonderful people from around the world. Each of us are striving in our own way to have victory over our respective illnesses. As a result of sharing our stories, we have been able to encourage one another in the midst of the dark times and celebrate milestones during the better times.
5. I am passionate about being an advocate for myself and others with Lyme Disease.
Navigating the complexities of finding an accurate diagnosis and pursuing proper treatment can be very overwhelming for patients and their families. Despite my healthcare background, I too found obtaining a proper diagnosis and treatment plan challenging. Now that I feel I am on a better road to achieving wellness, I write openly about my treatments so that others may have some additional ideas and resources to discuss with their physicians.
I believe the more honest and real I am about my battle with Lyme Disease, the more people can be helped by my experience. Tell me, why have you chosen to or not chosen to tell your story?