Lyme Time: Kindness matters

Posted:  Wednesday, February 7, 2018 - 7:45pm

KINDNESS MATTERS is a campaign designed to change the way people interact with each other. It is the legacy of a 13-year old who took his own life after years of bullying. The campaign is not just about bullying, stating that not everyone is a bully, however, if everyone could just be a little bit kinder towards one another, that can change the world.

Kindness goes a long way. It can calm volatile situations and change a person’s day or even their outlook. It can impact how they treat the next person that they encounter.

In the Lyme Community, there is a lot of anger that at times overwhelms and overtakes the random acts of kindness that are occurring. The way people are treated by their medical provider(s) and others afflicted with tick-borne diseases, can affect how they themselves treat others. I’ve witness internal attacks among chronically ill Lyme patients, who have been victimized by the system and who see no way out other than to attack everyone and everything around them. When anger is their strongest emotion, any efforts to improve their situation, no matter how small, come under attack as not good enough; meanwhile peaceful advocates continue to toe the line with talks and events, in hopes of bridging the gaps, to continue to provide aid to those in need.

Like with any illness, there is always going to be disgruntled patients who want what they want, how they want it, when they want it, and they are not willing to negotiate or accept anything less. This is not how problems are solved. If we are not willing to sit down and listen, to have a peaceful and respectful dialogue, validating the concerns from both sides and try to find common ground and compromise, we are never going to get anywhere.

Just last week, I had the opportunity to speak with someone I met while on my own journey to health and wellness. It was while we were both in the throes of treatment that we commiserated over our situation, shared and vented our experiences. In the throes of any crisis, people will lament. It’s their right to do so, for no one truly understands what that person is feeling. We can know that they are in pain or struggling with cognition functions, but we ourselves are not going through it, we are not feeling that pain, we are not struggling to make sense or put things together. We are only going to understand so far. My friend could not understand why I was no longer angry about what I went through. I informed them that I was angry but that I was choosing to funnel it in a more positive manner so to invoke change. This is where kindness matters most. To show kindness even when we do not fully understand what is going on.

This is what we need all medical providers to understand. Just because you’re not trained on or have a lot of experience with a certain illness, it doesn’t take a medical degree to expel compassion and kindness to the person sitting in front of you, scared and struggling to make sense of what is happening to them. I remember being scared and angry. Scared because nothing made sense to me and I was having a great deal of difficulty functioning and it was very apparent to those who visited me during treatment. I was clearly not myself. I was angry because it took over twenty-three medical providers and specialists, all that time and expense, before I was finally diagnosed by number twenty-four. All that time of being sick, feeling sick and scared, of slowly losing a little more of myself every day until I no longer recognized the frail woman staring back at me in the mirror.

 Andra Day sings a very powerful song called “Rise Up”:  “You're broken down and tired - Of living life on a merry go round - And you can't find the fighter - But I see it in you so we gonna walk it out - And move mountains - We’re gonna walk it out - And move mountains. And I'll rise up - I'll rise like the day - I'll rise up - I'll rise unafraid - I'll rise up- And I'll do it a thousand times again.”

Many of the 23 providers didn’t want to listen to what I had to say because it didn’t fit into the box on the screen that they were using to diagnosis me, so therefore I was wrong. Instead of addressing symptoms that didn’t make sense to them, they forced me into a box that I didn’t belong in, gave me a label and sent me out the door. Many times, I felt unheard, misunderstood and repudiated…and I remained sick, growing sicker.

Bullying is not always sticks and stones. It’s neglect, it’s ignorance, it’s using words that tear us down and break us apart in our most vulnerable time. It’s discrediting and dismissing what you don’t understand.

Kindness matters no matter what you are going through. Kindness can keep us going through the tough times. Kindness can keep our head above the water when we feel like giving up. It’s stepping up and saying, “I’m not sure but let’s find out together”. Let’s rise up together and move those mountains!

Paula Jackson Jones is President of Midcoast Lyme Disease Support & Education, a nonprofit 501c3 and Maine-partner of the Natl Lyme Disease Assoc, member of Maine’s CDC Vector-borne Workgroup and active in Lyme legislation. You can reach her at or visit their website