The Truth About Life as a Lyme Warrior

The National Institute for Health states that $63 is the average spent per Lyme patient. I’ve invested nearly $200,000, and I still have Lyme disease/co-infections and all the glorious symptoms. This is not an uncommon experience for those of us living with Lyme.

Lyme is underfunded, under-diagnosed, understudied, under-supported, meekly understood, if not entirely misunderstood, and treatment-resistant in approximately 20% of cases. Outside of the treatment of two weeks of antibiotics, that is if we are one of the rare ones to actually have a positive Canadian test, the medical system often fails. Instead of sound medical treatment, they may refer you to a psychiatrist, because we “look good,” so apparently it’s impossible for us to feel bad. Of course therapy doesn’t eradicate an infection, but it does help us cope with the medical trauma we’ve endured along the way.

Eventually, when it gets to the point where the Lyme infection has destroyed your body and immune system, which it most often does, they’ll start treating the newly acquired autoimmune diseases, malabsorption issues and faulty organs. They will close gnarly medical reports stating serious health issues with “otherwise healthy young individual,” like there is any semblance of health left. All this, as your body and life have been and can continue to be destroyed, yet no matter what the conclusion often remains, “We don’t know why this patient is having these symptoms or their health is failing, but it can’t be Lyme disease.”

One of the many tragic consequences is that as patients, we learn to expect little out of our doctors, the medical system as a whole or our limited resources and support. We learn to function through astronomical pain and fatigue that would keep others in bed for weeks. We lie in bed herxing (term to indicate when our body is reacting to treatment and demonstrating a Jarisch Herxheimer response), and contemplate what death would feel like rather than seek support in our own local hospitals, because we’ve been shamed and blamed and belittled one too many times. Often, at that point, we’d rather stay home, risk our lives and keep telling ourselves “It’s just Lyme.”

We lose feeling in our limbs, forget our friends’ names or where we are, our vision and hearing goes, and we can feel as if our brain is expanding within our skull in the form of another debilitating migraine. But we just shrug and tell ourselves again, “It’s just Lyme,” and hope it passes sooner this time. We read lots of treatment options when our brains can let the words on the page line up and form comprehensible sentences, only to spend copious amounts of money on treatments, going further and further into debt for one more hope that the next option will actually work. Even if we were able to work, therefore had insurance, most of the treatment options available either do not take our insurance or we max out right away. None of it matters though, because often we can’t keep the treatments straight and likely won’t remember those we do figure out initially anyways.

We want to explain to our family and friends and be understood, but we know that even to us, it all feels irrational and impossible to have such multi-systemic complaints, which are intermittent and change often. Some are severe and intense but then come and go quickly, replaced by others, and some are consistently there in varying degrees. The fear of judgment is something else we definitely don’t want to deal with on top of our physical pain, debilitation and emotional overwhelm from it all. We don’t want to take the chance of being sent back to psychiatrists or psych wards either, or be told to stay positive, or to just eat kale or try CBD. So silence wins and our diaries explode.

Those friends we made at the last treatment center where we gave more than everything we had only to end up worse, often get our truly pained phone calls. These people are often the one ones we can say, “I can’t do it anymore,” and they’re chill about it. They know exactly what you mean and that another treatment fail has come or the pain has been consistently too agonizing, and it is not that we want to die, but we want so badly to actually live.

The more years that go by, the less likely it all seems things will get better. However, we get up every day, and keep trying, holding onto the good days with all we’ve got. We always keep hoping. Keep dreaming. We deepen spiritual practices as many often do, praying even though perhaps we have never been religious. We try to believe in miracles, even when sometimes all we see on the horizon is a dark line of impending doom. The storm isn’t just coming though, it’s already arrived and there is possibility it could continue until we die, and that’s something we have to somehow find peace with if we want to try and live this life.

Not only do we do this, but often with a smile. Often with such light and radiance that of course others don’t think we are ill, how could they, because they may never have even made it this far. Every day is facing adversity. We focus moment-to-moment, observing the difficulties, appreciating the good and holding hope for better. Through extensive self-work and advocation we continue to rise and try after each and every fall. It is not the conquering that makes the warrior, it is the courage to continue to fight each and every day for a better life. That, my love, is why even in our daily battles, we are already victorious warriors.