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
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.
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,
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
Types of Activism Movements
- Arm Chair Activist: Someone who raises awareness with online events, through Facebook posts, Twitter or other online social media.
- Legistlation: This is a long tough process but in the end has a big pay off if you do it correctly. Check out the differnt states that have differnt Lyme Bills.
- Rallies & Protests: This is a notorious way all throughout history to get attention for your cause. Remember if you put one of these together that many have been done before. You might want to consider joining in an already existing team such as The Mayday Project. Click here for the history of Lyme Protests and Rallies
- Awareness Walks, Runs and Rides: These are great. Lots of people show up, but usually mostly Lyme patients and their family. They are good for bringing a community together or to raise money for a cause, but don’t expect a lot of attention from the general public or media sadly. Here are some guidelines to help you plan a Lyme Walk.
- Flash Mobs or Die Ins: This is when a group of people come together to do a dance, a song or a “fake death” in public. Click here for the history of Lyme related “Die Ins.”
- Writing Newspaper Articles: You can generally send any story you write to your local newspaper to see if they will print it or put it on their online website. Send them your Lyme story or write an article about a Lyme awareness event that will take place in your town. See some Newspaper Articles Here
- Blog or make a Website: You don’t have to be a perfect writer to make your own blog. It is also free on Blogger or WordPress to start your own blog or website. Just sharing your Lyme journey can help others feel so not all alone. They also help get the word out about events, any breaking research or treatment news and just help people learn about your illness.
- Art, Music, Poetry, Photography or any type of Artistic Expression: Use your natural talents and imagination to bring awareness to Lyme Disease. Minnesota has been doing art shows for a couple years now, see them here. Click here to see Art, Music and Poems Inspired by Lyme.
- Educating the Medical Community: Again, expect some resistance with this one. Not all medical practitioners are open minded when it comes to Lyme disease. Ilads offers physician training courses. If you can organize either a CME course to be offered at a hospital near you or you can raise money to send a physical to New York for the ILADS physician training.
- Raise money for Research: Here is a list of organizations and what they do with their money.
- Start a campaign: There have been so many different Lyme awareness campaigns. You can either join in one of the pre existing campaigns or be creative and think of your own! Click here to see what has already been done.
- Letter Writing Campaigns: Lyme patients have put together many of these campaigns. They have done group letter and phone calling events to congress, celebrities and to doctors.
- Make Youtube Videos: Document your story, treatment progress or film an awareness event. Click Here to see some Youtube Lyme awareness Videos people have made.
- Make Documentaries: Check out Under our Skin, Emergence, The Lyme Altar: A People’s History of Symptoms, Sacrifice and Hope and Under the Eightball.
- Write a Book: Share your story in a book. See all the different Lyme books here.
“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
Join a Pre-Existing Lyme Campaign
- 1000 Letters for Lyme: Lyme patients write to doctors who don’t seem to have much knowledge or giving out misinformation about Lyme disease.
- Be Kind for Lyme: A campaign started to encourage to make videos of acts of kindness and other activities like interviews wiht Lyme advocates and other Lyme patients.
- KB’s Adventure: A koala that travels around to visit Lyme patients around the world.
- Lyme Lives Heres: Global Lyme and Invisible Illness Organization documented Lyme Lives here being done as a part of the Worldwide Lyme Protest. Karen Smith created several graphics as a banner for Facebook with each countries flags on it with the phrase, “Lyme Lives Here” attached.
- Recycle for Lyme: Raise money for Lyme Disease by sending in your recyclables.
- Red Shoe Day: A day to remember those who passed from Lyme Disease.
- Ribbons Across America: This was started by Trish McCleary of S-L-A-M. Each May tie up green ribbons on your trees, mailboxes, cars and anywhere you can think to turn your town green!
- Samantha’s Annual Lyme Life Awareness “Green Light” Campaign: In 2011 a Lyme Patient named Samantha had an idea. She thought it would be a really good awareness campaign to have people replace their porch lightbulbs with green bulbs to “light up green” for Lyme Awareness month, which is every May. Read “Neighbors Light up their Town Green for Amy.”
- Take a Bite out of Lyme Challenge: Similar to the ALS awareness ice bucket challenge, people were encourage to video tape themselves taking a bit of of a lime.
- The Lyme Quilt: A quilt hand made and made up of many squares representing Lyme patients.
- The Mayday Project: This group runs the IDSA Lyme Protests.
- The Traveling Lyme Flags: The Traveling Lyme Flags were started by Wisconsin Lyme patient Deb Labarbara. You can rent them for events and display them in creative ways. There are hundreds of these flags and the ones with black ribbons tied on them represent those who passed away, the ones without the ribbons represent different Lyme patients who are too sick to be at these events.
- Worldwide Lyme Protests: This was a global movement where Lyme patients from around the world came together to protest for Lyme recognition. Click here and click on any country to see the pictures of the Worldwide Lyme Protests.
“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