There are so many dedicated Lyme disease activists around the world fighting for recognition, accurate testing, and patient rights. Today I’m chatting with two of them, Lisa Hilton and Karen Smith, who teamed up to found Global Lyme & Invisible Illness Organization, a worldwide Lyme advocacy project that helps raise awareness around the globe.
Lisa Hilton & Karen Smith
First of all, tell us a little bit about yourselves. How did you meet and what inspired you to found GLiIO?
Lisa: Karen and I met while we were working on the Worldwide Lyme Protests together in 2013. She was the Australian coordinator and I was the US coordinator and we just worked well together. We also got along on a personal level. After meeting so many wonderful activists around the world, we didn’t want to see those ties get lost, so we kept in touch with all the worldwide advocates and started Global Lyme & Invisible Illness Organsation to keep a central base, to keep track of what is happening Lyme-wise globally. We try to keep track of support groups, websites, and events so people have an easy way to find what is happening in Lyme activism around the world. Many awesome Lyme activists from different countries around the world help us and keep us updated on the latest happenings.
Karen: When I joined Facebook in 2011, there were only about six or so Australians on there who were aware of Lyme. I joined up with some international groups and just watched and learned as much as I could. Lisa was always helping others or organising some event or another, posting on her website. When the call went out for international activists with regards to the worldwide event in November 2012, I signed Australia up and then I tagged Lisa for the US. We hadn’t really talked a lot before then, but I had seen all her work. Since then we have became good friends and we work so well together, and, as Lisa notes, our aim is to unite all those campaigning for awareness and recognition around the world.
The name of your organization implies that it extends beyond Lyme disease. Are you involved in broader invisible illness activism?
Lisa: Yes, when we refer to “invisible illnesses” we are speaking about the many co-infections and other conditions that are associated with Lyme disease. We will expand our information on this in the future on our website. But we believe that many illnesses are linked to Borrelia such as fibromyalgia, ME/CFS, Alzheimers, Lupus and many more. Karen has put together a page on this here.
Karen: Exactly as Lisa said. When we were first incorporated, our name was Worldwide Lyme Borreliosis Association. When we founded Red Shoe Day however, we began to think that so many people, before finding out they have Lyme and co-infections, have been misdiagnosed with other invisible illnesses.
The emphasis on global Lyme awareness is central to your organization. You have helped organize and document protests in Sweden, Poland, the UK and many other countries around the world. Why do you think inadequate care and health coverage for chronic Lyme patients is such a widespread problem?
Lisa: It is sadly the same story all over the world. Doctors are just not educated properly about Lyme disease. It seems that Lyme disease is just swept under the rug no matter where you are from. It is hard to truly understand the “whys” of this and there are many theories. The IDSA Lyme Disease Treatment guidelines and the CDC’s backing of them is a huge part of the problem. Many countries follow the US IDSA guidelines and they are just clearly not sufficient for treating chronic Lyme cases, although we are making baby steps slowly moving forward as the ILADS Treatment Guidelines are now posted on the National Guideline Clearinghouse website.
Karen, I know that you’ve been heavily involved in Lyme activism in Australia and that you actually had a chance to meet with the Prime Minister for tea. Can you tell us about that experience and the other work you’ve been doing to raise Lyme awareness?
Karen: The opportunity to attend an afternoon tea with the Prime Minister came up quite suddenly. A couple of days after the death of a friend and fellow Australian living with Lyme, Scott Chant, I saw some information about an afternoon tea with the Prime Minister being held locally. I applied for an invite on behalf of GLiIO and explained to them that I would like the opportunity to represent Lyme patients. We were fortunate and very pleased when granted an invite for myself and a friend, Jennifer Cox, who picked me up and drove me there.
There were over a hundred people there from various organisations wanting to talk to the Prime Minister, so we each only got a couple of minutes to put forward a question and present information. Basically, I spoke to the PM about Lyme and asked him whether he was aware that there was a senate inquiry on Lyme at the moment, to which he replied, “Yes,” but that he wasn’t really up to date with it. I handed him the folder with Scott’s submission and explained that the process was taking too long for some and that Scott was no longer with us. At that point the smile quickly vanished and he expressed condolences. I also handed him the folder with research (a counter argument to the 1994 study that the denial in Australia is based on) and the background information on Red Shoe Day and Global Lyme & Invisible Illness Organisation. This folder also contained the aims, goals, and work of the associations that were able to prepare them on short notice. These included MSIDS, Ruby Red Trust, Sarcoidosis and Lyme and Chrysalis. The Prime Minister took both folders. I then shook his hand for agreeing to read them. I also spoke to an MP and Senator, who wanted copies of the info I gave to the PM, and I also did an ABC radio interview.
My other work with LARA (Lyme Australia: Recognition & Awareness) is to highlight the need for recognition and awareness of Lyme in Australia and worldwide, to provide scientific information to the Australian Health Departments about the urgent necessity for adequate research, and to provide basic, easy to understand information on Lyme disease, how it is transmitted, and how it can be associated with so many health problems.
You created Red Shoe Day, a memorial day for people lost to complications of Lyme disease. Tell us a little more about this event. Why is it called Red Shoe Day?
Karen: The concept of Red Shoe Day began in an Australian Lyme support group after Theda Myint’s passing. We chose red shoes instead of green because green would restrict the symbolism more so to Lyme and we wanted to incorporate all invisible illnesses in this remembrance day. And red shoes were Theda’s favourite.
After Theda’s passing in 2013, when the idea about Red Shoe Day came up, I knew that this was something I wanted to see happen. Having recently worked on international awareness events, and knowing other advocates in various countries, I felt that this event would be embraced by people all over the world and Red Shoe Day became International Red Shoe Day.
When I spoke to Lisa about it – and the possibility of making it one of GLiIO’s first Projects, Lisa was very much on board and loved the idea, and a remembrance day for all invisible illnessess was an aim we were both committed to achieving. With the support of many throughout the community the inaugural Red Shoe Day was July 25th, 2014.
Not long before the Inaugural event, Lisa lost one of her close friends, so I think the inaugural year of the remembrance day has some very personal memories for both of us and we are proud to be able to give people a time to remember their loved ones.
We also like to encourage the view that while the 25th of July is for remembering all those lost, it is not only to remember their passings, but to celebrate their lives and to remember and share the wonderful memories their time on this earth gave us. We ask that people share something about their loved ones to help their memories live on. One quote we use is that of David Engleman:
There are three deaths. The first is when the body ceases to function. The second is when the body is consigned to the grave. The third is that moment, sometime in the future, when your name is spoken for the last time.
So Red Shoe Day remembers all those we have lost, but also prolongs the last and final death of these beautiful souls by always speaking their name, and it helps family members and friends to know we are always there to talk to and remember with them.
The Poem “I Wear My Red Shoes” was written by Ally B. (England) in the inaugural year of RSD. It explains so well what the day is all about.
Today I wear my red shoes with pride,
For each fallen warrior…all those who died.
Like the poppies that grew where valiant men fell,
These red shoes dance on; in the face of all hell.
Our battle on-going, we remember those lost,
And why we’re still fighting and all it has cost.
Red is the anger that fuels our fight,
For ‘invisible illness’ to be set in plain sight.
Red are the hands of those who won’t see,
The suffering and dying; nor heed our plea.
Red is for courage and strength to go on,
In the face of adversity, we try remain strong.
Red is the love we have for each other,
We’re bonded by illness like sister and brother.
For all those still suffering and all who are gone,
This army of red shoes will keep marching on.
And maybe someday we will see on the News,
That the whole world now knows why…We wear our red shoes.
You also host an annual blanket fort party, which honestly sounds like the greatest thing ever. Can you tell us a little more about this?
Lisa: Each holiday, there are thousands of Lyme patients that are too sick to participate in holidays with their family. While others are out celebrating, eating, drinking, and spending time together with loved ones, many Lyme patients are at home in bed alone. For many Lyme patients the only “social” activity they have is online. So for holidays we want to reach out to as many as we can and let them know they are not alone. We want them to still feel a part of the community, to not feel so isolated by this disease.
So on holidays we host an event through our global Facebook page and we all “hang out” for the day. We thought since many of us are stuck in bed, “blanket fort” party was a cute name. On these days we post fun questions, have word games, post funny pictures and try to get everyone involved. We always have several volunteer hosts that help us so that no matter what time it is that someone goes in there, there will be someone to talk to.Q&A with Global #Lyme & #InvisibleIllness Organisation Founders Lisa Hilton & Karen Smith Click To Tweet
You mention a project called Theda’s Foundation on your website. Can you tell us about it?
Karen: Basically Theda’s Foundation is another project/division of GLiIO–one that, due to health, I haven’t really been able to get underway. I’m hoping to expand it over the next six months (afer May events and Red Shoe Day when there is a little more time). The Theda’s Foundation website is is a place to showcase the works of artists with Lyme, some of whom sell their artwork to pay for treatment.
Theda’s mum, Carol, looked after her for fourteen years and there was no help or anywhere to go. Many people are struggling, don’t have anyone who understands, and lack funds. The primary aim of Theda’s Foundation will be to raise funds to build and develop Theda’s House, a place for patients and caregivers requiring support, in numerous locations around the country. There are plans afoot for next year with regards to how we are going to fund the houses, but I wont give to much away just yet.
How can people get involved and help support the work of GLiIO?
Lisa: We could always use volunteers. It is so helpful when people reach out to us and let us know what is going on in their country. Whether it’s support groups, websites or events taking place we’d like to list it on their country’s page. We also need volunteers to help us keep our Facebook page updated, to host different time slots for the Blanket Fort Parties. I think the most meaningful project we do is Red Shoe Day. So getting your red shoes out and participating in this is the most important thing to Karen and I and to the families who lost someone to Lyme disease. You can participate in Red Shoe Day by wearing red shoes for the day, sending us a picture of you and your friends in red shoes, sending an article about Red Shoe Day to your local newspapers, and having gatherings to celebrate the life of someone you lost to Lyme disease.