How to be a Lyme Disease Activist


We get asked a lot, especially by the newly diagnosed Lyme patients, or their family members,  what they can do to get involved in change. Once they learn how hard it is for Lyme patients to get diagnosed properly and  and then learn the difficulty in getting treated, patients and family  members often start on their journey into activism and/or advocacy. Here is a little guide that will give you some tips and point you in some different directions.

Take a Deep Breath

Fueled by motivation to get better, anger at the situation and a need to do it now, people often want to just dive head first into the pool of activism. But before you do that you need to take a deep breath and slow down your racing thoughts.  You will need to put a game plan together. You will need to pick which arena of activism you are interested in and able to do.

“How wonderful it is that nobody need wait a single moment before starting to improve the world.”
― Anne Frank

Educate Yourself

Learn about the Disease Itself
Before diving in, you need to  learn about what it is you are fighting for or trying to change. That seems like a given right? Well you would be surprised how many people don’t do this. It takes a long time to learn about the controversy behind Lyme disease. It takes even longer to learn the about the disease itself, the co infections,  the treatments that do and do not work and what has already been done before.

Visit sites like:,, natcaplyme.orgwww.globallymeinvisibleillness.organd

Learn what Current events are happening and what has already been Done Before
Before starting a campaign or planning a walk or protest, make sure it’s not already being done. So many times people start an event without realizing there is someone already doing it. For example the, “Lyme Lives Here” campaign has been done by multiple groups and organizations and individuals trying to start grassroots  campaigns. What happens when this happens is you split the numbers or people who get involved. Instead of one big group all participating in the same challenge, you have little groups doing each one lessening the chance of media involvement or it getting any attention at all. It makes each group smaller and people are generally attracted to “big.” So it’s better in this case to join in a group that is already doing it then creating it all over again your self. Plus you don’t want to step on toes. If you want to be an activist you want people to want to join you in your  campaign, not resent you for stealing other people’s ideas.

Remember your motivation is to bring people together for the cause, not divide already existing groups.


There are many motivational factors for Lyme disease patients or families who want to get involved in activism.

  • The need to get better,
  • The need to help others get better, such as getting funding for treatment, food or bills.
  • Helping a family  member or friend.
  • The need for recognition for a disease that is denied.

To become a strong activist you will need to hold on to this motivation. You will need to dig deep and remember what originally drove you to want to do what you are doing. You will face considerable challenges along the way that will make you question continuing. Make a list of why this is your passion, your personal reasons for wanting change and look back on it from time to time to remind yourself of what your motivation was/is.

“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”
― Margaret Mead

It’s a Long Road

You will surely come up against many challenges. Here are some.

  • Getting Started:
    This is probably the hardest challenge. It is intimidating to start a new adventure and have no idea where to take the first step, especially if you are very sick while taking it or taking care of a sick family member. What is important is just taking it. The first time you announce your new campaign will be exciting and yet anxiety provoking. It’s ok, just take that first step and then things will start to fall in place.
  • The Pace:
    Activism is a slow process. Change rarely takes place over night.  Sometimes it seems like our actions don’t matter. Sometimes it feels like all your hard work and endless hours are going for nothing. It will feel at times like noone is noticing and nothing is changing. But that is never true, even if you can’t see it now, you are puzzle piece in a  bigger picture that is slowly coming together. All actions count no matter how big or small. Keep on little turtle, keep on.
  • Getting Help:
    This is another tough part of activism. Trying to get support, help or volunteers is always a very trying situation. First of all, remember you are working with people who are usually very ill. Not to mention, with Lyme disease sometimes you might take on a task while you are having a “good day” only to be encounter the bad days again and have to stop whatever it was you were working on. This is going to happen to you and to your volunteers. Be gentle with yourself and be gentle with them.* Try get family members or friends involved that are not sick.
    * Put together a team and give each person a small job that they can handle.
    * Be patient and don’t give yourself unreasonable timelines.
    * Remember how sick the community is and don’t expect too much from them.
    * Media is a valuable commodity these days and online events get as much attention as “physical” events and are easier for people to contribute in.
  • Encounters with Unfriendly People
    There are always going to be nay-sayers. There are always going to be people who sit on the couch and watch what others are doing while not doing anything themselves, and criticize those who are doing something. This is one of the toughest parts of activism. It is hard to not let these people get to you. Again, your “motivation” list you made earlier will come in handy, Reread it as often as you need to. Don’t let negative or mean people stop you from making positive changes.Remind yourself of these reasons that people might attack you:* They are jealous of you.
    * They may have an infection in their brain that is making them not think properly.
    * They are on “the other team” and trying to stop progress.
    * They are just plainly ignorant about your cause.
    * Some people are just mean.
    * Some people are  trolls. (People who scroll the internet looking for people to attack)
    * Some people are just negative about everything.
    * Some people are just crazy, really really crazy.

    Don’t let these people get you down. Take a day or two off to recover from attacks if you need to then keep moving forward. If you are working from your heart, you are headed in the right direction.Also remember it is better to ignore them then it is to feed their fire. They love the negative attention and thrive on it. They will do what they can to upset you and get a reaction out of you. The quickest way to get rid of them is to ignore them.
  • Financial Hardships/ Fundraising
    This is always hard for obvious reasons. Number one we are working with a community that is broke. Everyone involved usually in their own fight to raise money for treatments  and daily living expenses. You will have to be creative and find ways to raise money for different events.

“Unless someone like you cares a whole awful lot,
Nothing is going to get better. It’s not.”
Dr. Seuss, The Lorax


501-C: If you start a non profit it will take much longer to get going with projects, but once you do become a non profit it is easier to collect funds. People and businesses can then donate because it is now a tax write off. Once you are a non profit you can have walks and awareness events in public places. Click Here on How to Become a Non Profit.

Grass Roots: Grass roots efforts can be harder financially yet they are so very intriguing. They do get media attention and people always like the underdog. But you will have to work a bit harder to try to get donations. Think creatively. Pick a project such as a billboard and make a page or website about your movement. Ask everyone to easily donate one dollar to our Paypal account and add a thermometer to your webpage so people can watch it grow until the needed funds are raised. People like to see exactly where their money is going and even though some will want to remain anonymous, some people will like to see their names listed as a donor to the project. Make sure to document every penny that comes in and where it goes.

“At the end of life we will not be judged by how many diplomas we have received, how much money we have made, how many great things we have done.
We will be judged by “I was hungry, and you gave me something to eat, I was naked and you clothed me. I was homeless, and you took me in.”
Mother Teresa

awrenesscampaigns for lyme disease

Types of Activism Movements

“There may be times when we are powerless to prevent injustice, but there must never be a time when we fail to protest.”
Elie Wiesel

lyme green

Join a Pre-Existing Lyme Campaign

“I’m for truth, no matter who tells it. I’m for justice, no matter who it is for or against. I’m a human being, first and foremost, and as such I’m for whoever and whatever benefits humanity as a whole.”
Malcolm X

Becoming an Activist: General Tips on Where to Start


Check out some of these Posts!

Lyme Disease Patient Die Ins Timeline

Lyme Protests History Timeline

Assembly Bill 768 – Rules Regarding the Diagnosis and Treatment of Lyme Disease

The Traveling Lyme Flags History and How to Order Them

Ribbons Across America

Samantha Reuter: Annual Lyme Life Awareness “Green Light” Campaign Founder

Lyme Disease Awareness Shirts Made by Patients

2 thoughts on “How to be a Lyme Disease Activist”

  1. Excellent advice and information! Thanks for sharing! Love the quote “Never doubt that a small group of citizens can change the world…”

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