What I Wish I knew 2 Years Ago...
There are a few things I wish someone told me when we were beginning the battle against an unseen enemy, Lyme Disease. Perhaps they will help someone beginning their journey or help someone relate to what a friend or loved one is going through.
There is no easy fix for Lyme. This disease is not a “take 2 weeks of Doxycycline and you’ll be fine” kind of disease whether you have found a tick or a rash or whether you have been on a two year quest to find out why your body is failing you. There is no scientific evidence that antibiotics “cure” Lyme. In fact, most people, including me, do not believe there is a cure for Lyme. We hope for remission, or simply, the absence of symptoms.
You need to educate yourself on Lyme because you must be your own advocate. We went into this treatment like we would as if we had a common bacterial infection like strep. Our primary care doctors told us that antibiotics would “make you feel so much better”, and they did take away chronic migraines, but at a very high price. While one symptom went away, it set off a chain reaction of other symptoms (numbness, muscle pain, fatigue, hair loss, weight gain, skin dullness, joint pain, brain fog, and more). We had no idea. When we received the diagnosis we only had chronic migraines, light & sound sensitivity and difficulty concentrating. I wish I had read the book Unlocking Lyme by Dr. Bill Rawls. I wish I had a clear understanding then of the differences between acute and chronic Lyme and which treatments work best for each and how to best support the body while is it undergoing treatment.
When they said Lyme is expensive, we had no idea. We had no idea the average person with Lyme pays $50,000 out of pocket every year. We had no ideas families split up, marriages fail, homes are sold or mortgages, second and their jobs are taken on and credit cards are maxed out to pay for treatments. I know of Lyme doctors in our area that cost over $1,000 for their first visit. I wish someone told us to watch Under Our Skin, so that I could understand that we were entering into not only a physical battle but a political one as well. The CDC is the puppet master defining what this illness is and is not (in their opinion) and thus the insurance companies will not cover treatment and doctors are forced to go outside of generally accepted protocols and thus do not take insurance.
Your loved one needs emotional support just as much, if not more than physical support. Do you know that suicide rates are estimated to be 1,200 per year and I believe this is very underreported. It is okay if a college student can’t attend college. It is okay to give it to a mobility aide. Support animals/therapy animals truly are life-savers. Offer to come over and watch a movie or take them for a ride to see the sunset at the beach or over a beautiful field. Don’t withdraw your friendship because they can’t do the same things they once could. When you move on in your life realize that there are tears on the other end of social media, tears of a little bit of envy mixed in with a little bit of self-pity. Be there to lift them up and hug them and tell them that tomorrow is a new day.
I wish someone told us to change your mindset very early on from “suffering from Lyme” to “living with Lyme”. Everyone in my home is living with Lyme, as a sister to a Lymie, or a parent to a Lymie. We are all affected and we are all in this together. We are living with Lyme and for as long as it takes, we will stand side by side until we can shout loudly that we have achieved remission. Until that day comes we will celebrate the good days, when pain in minimal, energy levels are higher and life seems somewhat normal and on the bad days we will all pile on the couch, pop some popcorn and watch a Hallmark Christmas movie.