When you are fighting Chronic Lyme Disease, there is no doubt that your life has seen a dramatic change due to your illness, that your priorities changed. Facing the harsh reality of being diagnosed with a chronically illness unleashes feelings of denial, fear and grief. You feel robbed of your best years. Your sense of identity and purpose, your perceptions and perspectives about the world shift. You see life through a different lens.
It is an unrealistic expectation to keep an optimistic outlook while you are dealing with chronic pain, burning under the skin, flares, fighting anxiety or depression. If that was not challenging enough, things get even harder when you have to hear harmful or annoying remarks regarding your condition. These comments can have a detrimental impact on one’s health or remission, as they can trigger negative relapses.
Here’s a list of the most annoying (if not cruel) things I heard over the years:
“Lyme is not real, it’s a hoax!
“You’re exaggerating or faking your symptoms!”
“Your symptoms are psychosomatic.”
“There are no ticks within the city! You’re paranoid!”
“You don’t look sick enough!”
“You’re not depressed, you’re bored! Depression is only another form of being lazy and avoiding work!”
“You should stop your treatment! You’re cured!”
“You should stop taking antibiotics!”
“You should not read daily about Lyme!”
“You’re being used a Guinea pig by your doctor!”
“Your Lyme doctor treats your bank account, not you!”
“You don’t eat enough! Some sugar or a drink won’t kill you!”
“You need to go out more and make new friends!”
“You’re getting depressed due to self-isolation!”
“You need to connect with more Lymies!”
“You shouldn’t follow doctor’s orders so strictly!”
“You should meet and give Lyme related advice to a friend of a friend suspecting to have Lyme”
“You became arrogant since you turned into a Lymie.”
“You need to get busy and get out of the Lyme bubble!”
You can imagine that any of the above mentioned remarks or suggestions were not helpful. On the contrary! Though, to be honest, the last one had some truth into it, which I discovered only later on. As a matter of fact, it turned out to be the most valuable advice I ever got regarding my condition.
In order to cope with the pain and the burning I had to find ways of preventing my mind of processing the thought of pain. I developed new hobbies and focused on those. I started to draw and paint. I learnt whatever I could find available online about painting and drawing techniques. I experimented with different mediums and fell in love with the acrylic paints.
Thus I discovered that the creative process had the amazing ability of shutting down the sides of my brain responsible for registering the pain. In a few months, I trained myself to ignore the pain. Someone had told me that “pain was in the brain”. That remark did not made much sense the first time I heard it, it turned to be 100 % accurate only a few years later.
When that happened, not only I was almost pain free, but I also came up with some nice artwork. Thanks to that, I was able to turn a hobby in a small source of income. I got commissions from family members and friends, while the rest are being sold online.
As for the writing, spilling ink had always a therapeutical side, even before contracting Lyme disease. During my darkest hours of sickness and pain and not only, poetry was vital for me, as it helped me channel my emotions, clear my mind, voice my deepest fears. It has always been my main tool to express positive and negative experiences.
Whiteless Thoughts and Burden of love are two poetry collections that I wrote over the years and finally published last year, each one embarking the reader in a journey of a multitude of emotions. Being able to connect with my readers and getting some “Get well! “ notes from them, had a positive impact. I felt that I was on the good path, that my voice had found an audience, that my efforts of raising awareness about Lyme were being seen and heard. The most touching note I got from one of my readers was from a reader in the states, a Lyme warrior as well, who thanked me for voicing her cause. I never felt more humbled.
I guess I am one of the lucky persons who was able to find the silver linings of this health challenge. If I would not have got infected with Lyme, I would probably had never taken the same path I am now. I wouldn’t have become an author, a ghostwriter or a self-taught artist. I would have not pushed myself to the limit or done tabula rasa. I certainly wouldn’t have discovered my real self and be happy with who I am. I would have continued working in a corporation, without tapping into my creative side. It’s ironic how some of the most wonderful moments of our lives are made possible by an event that we wish it had never happened to us.
What are the positive things that you discovered within your DNA after being diagnosed with Lyme disease?