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This disease is difficult to understand and very hard to explain. These complexities overlap with other invisible illnesses, so resources here may be useful for other illnesses as well.
But as you know or will be discovering in your reading about Lyme, there is a hardly a disease of comparable complexity when you start to encounter the controversy—medical, political, financial, biological—surrounding this illness.
The disease itself, the challenges getting diagnosis and care, and the politics are all quite a bit for family and friends to digest. This is only part of what makes this illness so isolating.
Understanding What It’s Like
Don’t be hurt if they can’t put this into words for you. They may not have formulated the words yet themselves. And as soon as they fill you on their treatment, it may change many, many, times and there will be times when the details are just plain easier to keep to themselves. If you are digging around and finding information, good for you. I am touched every time I see a friend or family member write a letter to a politician or to doctors through The 1,000 Letters Lyme Campaign. But you will probably see the quite true statement in your reading that “you don’t get it until you get it.” A great number of cliches acquire new meaning and significance through this illness.
The “Spoon Theory” A Classic among invisible illness sufferers (not as commonly passed around amongst Lyme patients, in my experience)
So You Have a Freind or Family Member with Chronic Lyme Disease: A Guide to understanding their struggle A blog post from the Tired of Lyme Blog
The Difference Between “Depression” and “Lyme Depression” Examiner.com article
Inspiration and Lessons from Others
Luckily (and unluckily) this journey has inspired friends and family of patients to write about their experiences, in order to help other patients and families understand this better and to know they aren’t alone in feeling lost.
It is very hard to know what to say and very hard to know what to do. I think there is a steep learning curve for the patients and loved ones as we learn how to communicate in both directions and learn to read where people are coming from.
TOUCHED BY LYME: When family members don’t believe you have Lyme An article from a dad regarding his journey with his daughter
Knowing What to Say
Saying the wrong thing is less damaging than trying to coach or inspire away this illness. This disease would counter a lot of my instincts as a parent if this were my child, because our job is to support but also to motivate, and I think a lot of well intended families try to redirect behavior and thinking—-which is just not how Lyme disease works.
Why Aren’t You Better Yet? The Peer Pressure to Heal from Chronic Lyme Disease, blog post on Tired of Lyme Blog
“To My Family, Friends, and Acquaintances” ~ A Lyme Letter From a Lyme Patient to Family and Friends
RSA Shorts ~ The Power of Empathy
How to Give Support
But how do you give yourself permission to just support your loved one if you feel it is your responsibility to motivate them to push themselves? I’m not sure, but my feeling so far is that advocacy is a big part of the answer, in that it can help you see what needs to be fought for FOR the patient rather than FROM the patient.
Top Ten Things you can do for someone with Lyme A blog post from A Lyme Disease Journal
Helping and Sharing
Please pass on what you’ve found that has helped you process, understand, or help your friend or loved one, or something they shared with you that really helped.
Additionally, there are ways you can help the Lyme community on their behalf, primarily through awareness spreading campaigns (see related tabs on the top of this blog).
Lyme Awareness ~ Five Things You Can Do Right Now An article on my RockyMountainMom, Hub Pages Profile
A Glimpse of Lyme Politics
The Lyme patient in your life may, over time, begin to sound a bit like a conspiracy theorist. The stress of the politics they face when trying to get diagnosed and treated is pretty unbelievable, and this situation they find themselves in is unbelievable. It is safe to say that ‘you don’t get it until you get it’. The politics at state and national levels are unbelievable, too.
It’s too much to understand in one sitting, and I doubt you will be expected to understand it all. And they may not really like discussing this side of things outside of Lyme support networks, to avoid sounding unbalanced or paranoid, among many reasons.
I think it’s worth it to get a feel for what they are facing, though, with at least a little exposure. This list could be pages long on it’s own, so remember this is just a glimpse.
Under Our Skin Documentary (and Sequel Emergence)
Yolanda Foster Basing Author Doctor Forgot to Research Lyme Disease, Part 1 Invisibly Lyme Montana Article
Lyme Disease Activism ~ Why Patients Are Protesting Hub Pages Article
Better Diagnosis and Treatment of Lyme Disease: Introduction to Dangerous Misinformation Hub Pages Article
Lyme in Oregon ~ Illuminating Conversation Highlights Need For Change Transcript/Blog Post