Shortly after becoming ill, the few people in my life quickly disappeared. Friends stopped emailing and texting. Invites stopped coming in. Messages were ignored. I had become invisible. I had ceased to exist. My illness had taken over. Lyme was my new best friend and no one else could bare spending time with “her”. It occupied all my time. It made me cancel appointments and plans. It left me cranky and depressed. It isolated and made me lose hope. The cunning power an invisible illness is that it can make you just the same- unseen,  utterly invisible. As if dealing with the physical toll of Lyme weren’t enough, quickly the psychological yarn of my life started to unravel.
Being invisible isn’t only about others not seeing you. You can no longer see yourself, not anyone you remember, anyhow. Looking in the mirror, my face wasn’t the one I remembered. Dark circles predominated. My eyes lost their sparkle. I never smiled. My skin was dry and flat.  Now unemployed, I could not afford make-up, skin care, or much of a  hair cut. All my money went to figuring out what was making me sick ( I still didn’t know it was Lyme in the beginning). And so, without much self-care and the disease taking a visible toll too, I quickly started to change.
The positive thinkers out there might have said, “You were a butterfly, shedding your cocoon. “. And maybe I was. But it still hurt like hell. My identity became that of a perpetual patient. Seeing doctors more than family, but never being heard or taken seriously, I was no longer me. I was patient X. Hypochondriac. A name in a waiting queue. A list of symptoms and test results. Of course, deep down I was still there, I had just faded away. My self and my view of the world like a TV set that had switched from full color to black and white. Hues of grey were shadows of a lost self and a lost life.
I don’t know how you deal with chronic, debilitating illness and not lose a sense of your self, or remain visible to the world. I would guess that most people dealing with chronic Lyme feel the same at some point. Maybe, its the negative-thinkers who tend to live this way, while the positive-minded Lyme patients have some magical way of dealing. I don’t know. But just maybe, I think that it is more about how everyone feels about illness that makes people like me turn invisible. Maybe we are all so scared of losing control of our health and our lives, that we close our eyes to anyone who might remind us of that inherently human vulnerability.

The Art of Getting Sick

About 6 years ago at the age of 30,  I got up from bed one morning, dressed myself as usual and headed to my office. I had just begun a new job, found a  new apartment in the city outskirts,  and  I had just started seeing someone.  Things were going well by all accounts. I never made it to work that day, I was stopped dead in my tracks with crippling fatigue. Little did I know back then but it was the start of a painful journey that would take me years to even understand I was on, much less know where I was going.

Today, at 36 , I know that the fatigue was a tell-tale sign of Lyme Disease. Today, with the help of a holistic Lyme Literate Doctor, I know what is happening inside my body and what it needs to recover. Today, I have hope.  6 years ago,  I didn’t have any of those things. I was alone in my sickness and utterly lost.

The path to healing that I have only recently begun is the greatest challenge I have ever-faced. Learning what was wrong with my body and where I could go for help proved to be a  a battle with medical professionals, strangers, family, and at times, myself.

For those of you blessed enough to  never have had Lyme Disease, it is an infection caused by the bacteria Borelia burgdorferi  passed on by a tick bite . There are blood tests available, and it’s symptoms are found in medical textbooks everywhere. It was discovered years ago, and treatments in the way of antibiotics are readily available* (I have put an asterisk there because “available” is a relative term). So what then is the problem?  Get bite, get sick, test for Lyme and get on antibiotics, right?   Simple enough you and anyone would think. But being diagnosed with Lyme in our day-and-age  is anything but simple. That’s where the fight and the “art” of getting sick comes in.

“You have Chronic Fatigue Syndrome”. Those were the words I heard from my Environmental Health specialist at a renowned hospital. “Quit your job (that you cannot work at), move back in with your family and apply for disability benefits. In a few years, with adequate bed-rest, you might get back some strength”.  At my age, just getting ramped up in the world like any 30-something, hearing those words smacked me right across the face and punched me the chest. I felt dazed. I felt numb. I felt lost. and I was.

My fatigue left me out of breath with simple walks. I woke up at night in cold sweats. I had dizzy spells, and blackouts. My muscles and joints ached like a bad flu that wouldn’t go away. The pain moved from muscle to muscle, seemingly as if I were creating it all with a writer’s imagination. Yet, my pain was not limited to my body.  Everything in my life suffered. My friends quickly faded away, not knowing how to deal with someone sick  like I was. My relationship with my boyfriend became a constant yo-yo of depression and frustration. My independence whittled away, and financially, I was barely hanging on. Being house-bound for 2 years, without friends, family support or a job to “escape” into, my life was engulfed in turmoil.

When you are sick with something that is acute, people seem to know how to act. “Get Better Soon! Hang in There”  they write on cards and texts. But when you have something no one understands, and some don’t even believe in, the greeting cards are never mailed. The text messages are not sent. You become a ghost, a memory, too intangible for people to touch.

In my loneliness, the diagnose though troubling, didn’t settle with me. I began researching with every bit of energy I could gather. I began looking into treatments,  into causes,  into alternative  diagnoses. It just didn’t feel “right” after a while. Say that to any doctor, and the suppressed eye-rolls are infinite. My gut, my instinct, would not let me rest ironically.There was more I didn’t know and there was something I could do to get better. I would not quit. I would fight. and I feared that I might not win.

“You have fibromyalgia, you have neuropathy. You have depression”.  There is nothing wrong with you. I heard it all. Try anti-depressants. Try Cognitive Behavioural Therapy, acupuncture, gluten-free diets, physiotherapy, massage therapy, Myer’s Cocktail, B12 injections, bio-identical hormones, anti-seizure medication,  IV pain treatments, and on and on.  Each time, I had some twisted sense of hope. As if being diagnosed with any disease is “good ” news. But there is an art to getting sick when you have a mysterious illness and by that I mean actually getting a diagnosis  of whatever “sick” you might really have.  There is no manual to read, no guidelines, no instructions, no proven path for all to take for those who are sick. For me, it meant listening to my own voice, however quiet it might have become. It took working a medical system that is fraught with gaps and inconsistencies, over-empowered egos, misplaced priorities and questionable motives. It meant dealing with my own self-doubt, fears, anxiety, and riding an emotional rollercoaster while finding some beauty, some hope to sustain me into the next day.

There is an old saying that says, “He who has health, has hope. And he who has hope, has everything”.  Having Lyme disease for years and suffering without answers, it was hope without health, even just some of the time  that was the true feat, the true art of what my life had become.