THE WORST 40 MINUTES IN MY WHOLE LIFE

Years back, while I was still struggling to get a diagnosis for my mysterious invisible illness, I reached the limit of my patience. I still remember this incident as if it took place yesterday. It was my first visit to a neurologist’s office. 

I really had high hopes for this appointment. After seeing many other specialists before him, all unable to offer me an explanation for my multitude of symptoms, I was hoping he would be the one that would have a breakthrough. I was kind of at the end of the line, facing a dead end.

To my surprise, this prestigious neurologist told me that I was perfectly healthy, that nothing was wrong with me and that I should return to work. I remember clearly  his annoyed face when he said to me: “Miss, everything is in your head! You are fine to go back to work!

In that second, I was shocked. I couldn’t tell exactly what was more painful: the physical pain I was enduring or the frustration accumulated within all those months of useless medical investigations. Or maybe it was the arrogance of this doctor who was insinuating I was a pretender.  

My mind was telling me, that at least he could have had the decency to buffer it, and tell me I may suffer of a psycho-somatic disease, meaning basically almost the same thing. I wasn’t aiming for compassion or empathy from him. All I wanted was an explanation for my symptoms. It’s hard to move on when you don’t know what you are fighting. 

But him, in his mind, he had taken a decision. He had labelled me as a lazy person trying to exploit the benefits offered by the workplace’s insurance company and avoiding to return to work. Within less than an hour, he turned me from a sufferer into a scammer.

Those 40 minutes spent in his cabinet seemed like hours. While I was there I experienced such mixed emotions. I felt powerless, angry, ashamed and miserable at so many levels.

  • Frustrated because the doctors couldn’t help me again. That I was tired to be treated like an interesting case and be passed over from one specialist to another.
  • Aching. I was physically aching. Running around from one hospital to another, waiting long hours until the actual consultation in the cold weather with temperatures way below zero were just some of the factors contributing to my chronic fatigue, exacerbating some of my Lyme symptoms.
  • Angst because I thought I was getting closer to my death since my whole body was in pain.
  • Ashamed because suddenly I had become someone who needed help. My pride dissolved into my anger.
  • Hurt because my genuine suffering was left unheard.
  • Angered because someone was thinking I was acting. Also for not being taken seriously and  not being treated with the respect and care I was deserving, that any human being actually deserves.
  • Scared because I did not know what was making me feel that way.
  • Worried because I did not know if whatever I had was curable or not.
  • Petrified by the idea I will loose my independence completely and I will end up in a wheel chair or even die.
  • Lonely because I was an emotional mess and my partner was also sick at the time. I spared him the details of my days, thinking that dumping all my problems in his hands will not help him recover from whatever he was fighting at the time. Therefore, I had only myself to share all of this colossal burden of thoughts.

 

What about you? What were you worst two minutes? Would you like to talk about it?

EXPLAIN MY PAIN: LYME

A journey of pain and suffering

Being a Lyme sufferer prevented me from getting back to working full-time and made me jump through a lot of hoops. In a nutshell, I was one of the lucky ones who managed to see the light at the end of the tunnel, meaning that I managed to find a way to live a normal life after becoming a Lymie.

I won’t lie to you, this was a long journey with ups and downs and many dead ends. It was a journey that I did all alone cause most of my friends vanished on the way. I moved on and I learnt to enjoy my solitude. I saw it as in investment in my own person, not a waste of time for social formalities.

Throughout this journey I gained a lot of knowledge and I feel I grew like a person. Maybe I finally grew up?! I learnt about suffering, compassion, sharing and love. And I now see the slight differences among all of their levels. I learnt how to talk to myself and more precisely how to listen to myself. The most important thing was that I finally understood that the power to heal laid in me.

Self-pity and fear of loosing control

At a certain point the self-pity took control and I was unable to see the way out of this sickness. I experienced lots of episodes of anger, self-pity and frustration.

Suffering from a mysterious illness and experiecing a wide array of strange symptoms are more than enough to make one question his sanity. Especially when no doctor can offer a medical explanation for it! Not to mention when they imply everything is not real!

When my health went down the hill to the point where I needed assistance to walk or take care of myself, these were the most frightening moments in my life. Loosing my independence hurt even more than the physical pain. The day I had to accept I was no longer independent and I needed help was a crucial point in my journey. I was lucky that one of my friends insisted on moving in with me in order to help me.

I couldn’t even hold a coffee mug in my hand, or walk straight for 10 minutes without sitting down or feeling exhausted. Then the sleepless nights started – the pain levels were so high that I was falling asleep only when my body was exhausted by pain.

Since my health continued to deteriorate and none of the specialists I had seen couldn’t help me, I decided to take this issue into my hands. I felt I had no time left for fighting doctors, an incredibly stupid and unfriendly medical system or an insurance company who was treating me just like a number, insinuating I was faking my symptoms.

Lyme Disease awareness

Lyme is a serious threat for everyone. It is a shame that so many people have to suffer just because the doctors are not properly trained to diagnose it. It is hard to believe that a tick bite can do so much damage!

My story echoes the voices of many other Lyme sufferers who underwent the same experience of getting infected with Borrelia burgdorferi, one of the smartest bacterias on Earth, capable of evading the host’s immune system and spread throughout the body wracking havoc.

Thanks to the Internet, more and more people learn about it and discover that it exists in their countries as well!

FINDING THE SILVER LININGS OF LYME DISEASE

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?

 

TICK BORN DISEASE WORKING GROUP MEETING BRINGS HOPE TO LYME PATIENTS

 

The lack of scientific progress regarding Lyme disease has created a lot of frustration within the Lyme community. Lyme patients are tired of being patronized, discounted and dismissed.

Thanks to the Tick Born Disease Working Group changes are going to be made. Within the two-day meeting  of the HHS Federal Tick Borne Disease Working Group held on December 11th and 12th, on Washington D.C., vital questions were addressed.

 

Here’s a bullet point summary of the meeting:

 

DEVELOP ACCURATE DIAGNOSTIC TESTS

  • Develop tests capable of recognizing all stages of the infection and the co-infections
  • Discard the two tier testing approach
  • Educate the patient regarding the test’s reliability (false negativity)
  • Fund new research 
  • Examine together medical anecdote, control studies, empirical observations
  • Leave aside egos, pride, intellectual rights, come together for a better cause.

 

FIND WAYS TO IMPROVE THE LIFE OF LYME PATIENTS

  • Forget the CDC definition of diagnosis
  • Recognize, treat Lyme and co-infections
  • Create a national education course for medical providers
  • Provide support to the doctors treating Lyme patients (no more penalties, disciplinary procedures, license suspension or other repercussions)
  • Allow physicians to treat the patients and their symptoms.

 

METHODS OF PREVENTION

  • Mass media prevention campaign
  • Tick awareness and prevention curriculum  should be developped and implemented in all forms of schooling
  • Develop a safe and effective vaccine against all Borelia strains and co-infections
  • Create proper screening technique to avoid transmitting Babesia to the national blood supply for the public’s safety.

 

 

For a more in depth information regarding the agenda, the public and federal members, stakeholders please watch the videos below:

Tickborne Disease Working Group NatCap Lyme Presentation

TickBorne Disease Working Group – Jenna Luche-Thayer

Tickborne Disease Working Group – Nicole Malachowski

Tickborne Disease Working Group – Susan Green

Tickborne Disease Working Group – Olivia (LivLyme Foundation) – Public Comment

 

LYME MOVIES

 

GRACE NOTE  is a recently released short movie (November 2017), based on true story, featuring Tracy Mulholland, Yael Grobglas, Jake Stormoen.

LYME ON THE RISE  reveals the stories of two Lyme sufferers who have been misdiagnosed for years. The video manages to  link their illness to the environmental changes we are currently experiencing.

UNDER OUR SKIN 1 (trailer)  a 2008 documentary about Lyme Disease.

UNDER OUR SKIN 2 -EMERGENCE (trailer) a 2014  documentary raising more awareness about Lyme Disease.