Karen Smith lives in Australia and was working on her PhD when she contracted Lyme disease. She now works as a patient advocate and raising awareness for lyme disease.
Lisa Hilton lives in Wisconsin and is also a Lyme patient advocate. She contracted lyme more than 20 years ago.
They met through their work with World Wide Lyme Disease Protest raising awareness and recognition of Lyme as a global disease. Right now they are organizing The World Wide Red Shoe Day for those who have died from Chronic Lyme disease.
This year Red Shoe Day is to remember all those we have lost to invisible illness such as Lyme, ME/CFS, fibromyalgia and the many more illnesses that are invisible. In the broad sense of the term, invisible illnesses are those that are generally “invisible”, not only from the outward appearance of the person, but also seemingly invisible to appropriate research, treatment and care of the thousands of people that are living with them. Many living with these illnesses are also “invisible” to society, as their health is such that they are confined to their houses, (and many to their beds) for months, even years.
The online communities and support groups are a lifeline to many who are unable to leave their beds/houses and are also an excellent source of information for those looking for support in discussing treatment pathways and coping strategies. The people within these communities/groups understand the struggles and adversity with very little explanation. Finding “someone like you”, leads to many friendships being developed, and the loss of someone from this community is felt by many, even those on the other side of the world.
Each death brings a heightened sense of anger (and a numerous range of other feelings) at the injustice of their illness being ignored. It is also hard, as whilst many offer comfort to those affected, it also brings a sense of ones own mortality (or that of the loved one you are caring for) to the fore.
We would therefore like to encourage the view that whilst the 25th of July is for remembering all those lost, it is not only to remember their passing, it also to celebrate their life and to remember and share the wonderful memories their time on this earth gave us.
Lyme disease is not easy.
P.S. If you have something to share, leave a comment below.