Kendell’s Story
One of us (Kendell Munzer) suffers from Chronic Lyme disease. She was diagnosed 13 years ago but suspects that it was latent for many years before that. Her diagnosis did not come about easily, and the path to the hope she eventually found was a long and rough one, fraught with many tears, anger and impatience. It was not a concept she was familiar with, and certainly not one with which she was comfortable. She viewed her disease very concretely, and in terms of healing: if she could not see it she did not believe in it. Her story starts with her doctor somehow missing the positive Lyme test on her bloodwork. She spent months, going from doctor to doctor, with countless visits to the ER in between, trying to figure out what was wrong with her. As time went on with no answers, she began to spiral and became more and more entrenched in her illness.
A debilitating fear crept in, and eventually took over. It was terrifying not to have any answers as she became increasingly sick. Finally, her initial doctor called her apologetically to let her know that the Center of Disease Control (CDC) had sent him a letter acknowledging her status as Lyme disease positive, and that he had somehow missed it. The CDC collects data on the amount of new Lyme disease patients every year and reports to the doctors that they have received this data. Kendell was elated, thrilled that she “only” had Lyme disease. Up until this point, everything she’d ever heard about the disease was that it was very easy to cure. Her doctor confirmed this by assuring her that she just needed a quick one-month round of antibiotics and she would be back to new. This news was beyond welcoming, as at the time among many other things, she had a 1-year old son at home and had been completely unable to care for him.
One would think this would be the end of her story, but unfortunately it is just the beginning. Regrettably, Lyme disease can become chronic if not caught early enough, so one simple round of antibiotics did nothing to help her symptoms. What Kendell needed was a longer antibiotic treatment, but her doctor refused. She was told if it did not resolve in one month, she had something else going on with her—possibly psychosomatic or psychiatric. Heartbroken, she was back to square one. Lyme disease is very controversial and misunderstood. Because of this, many doctors either do not believe in or will not admit that chronic Lyme disease exists (the reasons for this are very lengthy and convoluted, but in essence it comes down to insurance companies and money, money, money!). Frustratingly, Kendell was facing a disease that did not exist, and doctors who wouldn’t treat her. She was at a place with the disease where she was almost completely incapacitated, and very close to just giving up. The debilitating pain and insomnia along with how it was manifesting psychologically was destroying her. Teetering on the edge, she had a realization: if she was going to get better, she had to change her mindset. Sitting idly by and being a victim to her disease was getting her nowhere, it was time for a shift.
