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?
I had a very similar experience. Not uncommon in our group. Went to the U of Washington medical school . Was told I was crazy. To see a shrink. Basic same disappointing, devestating CRAP.
I am sorry to hear you had to pass through that. It’s a shame that the medical community does not invest more time and resources to teach doctors (specialists as well) how to recognize Lyme.
My story is so much like yours. 17 doctors until I finally found out was wrong. I often wonder if that first one had not labeled me a psychosomatic syndrome…. would I even be in the situation I am today. Only God knows the reason. Though this illness has made my body all the more fragile and human, my heart and soul have grown tremendously in the fight. Lavi, I stumbled on your blog by chance. Are you of Romania decent? I have a very good friend named Lavinia. If you are an Orthodox Christian would you be interested in starting an Orthodox Lyme support group on Facebook with me? Sometimes, all we can do is lift our hearts up unto Him. There are so many of us suffering this fight. Regardless, may you be blessed for sharing your story. -Presvytera Tiffany
Hi Tiffany! Thank you for reading my story and taking the time to leave me a message. Sorry for the late reply! I can relate to your experience of heart and soul growth. I was able to find the silver linings of this illness and discover a new version of me, more stronger and caring. It took long but it was an eye opener for all the things I was taking for granted. And yes, I am Romanian descent. ;0) What is your Facebook name?