Disclaimer: This post is not intended to make anyone feel bad or to criticize anyone for saying things about my illness. My hope is to educate those who done have Lyme a little about the differences in Lyme patients. If I offend you, I’m sorry. And this is not directed at anyone specifically – again, general education.
I read a post this morning on one of my Lyme groups from a gal who is frustrated that non-lymies don’t get that Lyme is different in each person. People tend to compare one lymie to another and offer advice that seems helpful to the non-lymie, but is actually extremely insulting to the lymie.
People say things like:
“Darlene got better with natural medicine”
“you should exercise more, movement will help loosen things up”
“are you taking enough vitamins?”
“have you tried rife? It worked for Bill””You’re not as sick as Linda, maybe you’ll get well”
“I know a gal who just decided to feel better – and now she is doing great”
* names are fictitious
There are many factors that affect the way Lyme manifests in individuals:
- Type of infection: we call it Lyme, but there are 100 strains of borrelia in the US and over 300 worldwide
- Co-infections: there are many different infections that can accompany Lyme – I have babesia and bartonella
- Toxicities: people with Lyme have weakened immune systems and my hold onto toxic substances – I have mold and lead poisoning
- Length of time before diagnosis and treatment: someone who is diagnosed early has a better chance of getting effective treatment – it took 8 years for me to get diagnosed
- Genetics: our bodies fight the disease differently – what works for one person may not work for someone else
- Many people have Lyme arthritis. Some may have mild neurolyme while others may have it so severely that they experience psychotic episodes. Some have extreme Lyme carditis, resulting in heart failure; others have mild cardiac episodes that get little attention from doctors. Some have cognitive issues, others have neuropathy. Some have a long list of symptoms; others have only a few.
I’m sure I’m missing something, but hopefully you get the point: not all Lyme is created equal.
Recognize Lyme for what it is – an extremely complex, highly misunderstood disease that is having a severe impact on the life of the person suffering from it.
Offer comfort and care and avoid giving advice.
Offer love and generosity and avoid judgment.
Offer compassion and understanding and avoid pity.
Know that we live in great pain.
Know that we suffer daily.
Know that we miss life.
Know that we want to be well.