It’s Lyme Disease Awareness Month which mean we get some well deserved time in the spotlight.
As I reflect on what Lyme disease has taught me, it has been so much more than an encyclopedia of medical knowledge and a how-to on finding the most discreet barfing corner in public. Lyme awareness means we have some designated time in the spotlight to share with others the realities of our misunderstood disease and dispel the harmful stereotypes placed on Lyme patients.
What I hope many can learn from Lyme Disease Awareness Month is to clear themselves of their own prejudicial perceptions and replace those with an open heart and compassion.
We must not forget it wasn’t too long ago when women were largely dismissed by their own doctors and faced a similar diagnostic outcome of “shut up and medicate.” We have this month as our own spotlight, our own chance to set things on the right track by educating those around us, to prevent these harmful stereotypes from continuing.
I believe it is our responsibility, as people living with Lyme, or the just as devastating– living alongside someone with Lyme, to break down these harmful stereotypes through compassion, understanding and education.
In society, we are trained to think of things we don’t fully understand in a black and white manner, and when we don’t understand it, we dismiss it. I am the first to admit I am a reformed believer- I grew up with a firm belief that herbal medicine and unicorns all were on the same plane of being realistic. I failed to truly take the time to try to understand the people behind the “attention-seeking, bored, needs-to-focus-on-something-else” stereotypes, until I found myself at the other end of it.
These days, Lyme has made me truly grasp that we need to take a step back and judge less when we don’t understand. Lyme disease awareness is about so much more than statistics and education on failed CDC protocols. Awareness is about encompassing compassion and a willingness to depart from personal ingrained stigmas and stereotypes.
Whether it’s unconsciously, subconsciously or with full awareness, people have a tendency to judge one another by the standards of their own experience. In hopes of facilitating an understanding of this disease, I ask that when it comes to a largely dismissed illness such as Lyme, to feel compassion first and not dismiss the realness of the experience of the person in front of us. Regardless of personal beliefs, it is critical to not dismiss the person in front of you or marginalize them into a harmful stereotype. Regardless of having an opinion on the subject or not, the fact is, no matter what you believe, the person with Lyme disease just wants to be acknowledged.
We have already experienced the questions, we have already experienced the self- doubt, we have exhausted all other outcomes and what we need more than an argument on personal politics, is the compassion and acknowledgment that may not come easy.
We ask that you not say things like “Oh I wish I could go to bed for months and watch TV!” or “Try taking your mind off of it, you’ll feel better” or, the most common “But you don’t look/seem/act sick.” We ask that you take the time to truly become aware of what life with Lyme really looks like, and understand it has no one category or “one size fits all” appearance. We ask mostly of all, to respect us when it comes to this invisible monster.
This was not the life we had envisioned either, but the reality is, this is now the life we live. And oh boy; could we use a loving shoulder to rest on.