A wise old owl lived in an oak
The more he saw the less he spoke
The less he spoke the more he heard.
Why can't we all be like that wise old bird?
~ Oxford Nursery Rhyme¹
Confronting an invisible chronic illness can lead a person to some very big life lessons.
Aside from handling the stress of the disease itself, I’ve had to contend with a lot of push back, uninvited opinion, rudeness and downright arguments about my illness. It’s nothing new to a person fighting multiple tick borne and/or Lyme disease. It’s not even unusual for a chronically sick person’s family to deny his/her illness. Aside from the Lyme and Tick Borne Disease community and the medical and healthcare professionals in it, there is little support and understanding from the general community.
Well-meaning people who know nothing about the disease will offer up holistic solutions.
“Take Vitamin C and take some herbs” they offer, or, “you should get a B-12 shot, that will really boost your energy. It worked for me!” I don’t even have the energy to tell them that a thousand B-12 shots would never work because I have a genetic methylation disorder. Others will tell me to exercise more and think positively. Some people are surprisingly rude enough to even grill me in order to diagnose their own aches and pains.
I’ve faced (non-Lyme) doctors who’ve forced me to get expensive, unnecessary tests in hopes of proving my diagnosis wrong and other skeptical doctors who attack me with questions regarding the length of my illness and how long my treatment will last. I've learned to use curt answers to avoid more arguments because "as long as it takes" doesn't fly in the face of the skeptic.
Then there’s the person inflicted with the incurable Stupid Disease. He’s the person that will tell you there’s no such thing as Lyme disease and that what I have a rare XYZ disease. And he’ll say this without a single bit of knowledge of my medical history or testing. In addition, he’ll offer the diagnosis without even being in the same room as me. I would say he is merely ignorant, but the truth is, you can fix ignorance with education, but you can’t fix stupidity.
The more I see of how people react to chronic illness, the less I speak.
If it’s one thing I’ve learned this past 18 months of undergoing treatment for a very difficult illness, it’s to shut my pie hole when other people talk about their own health challenges. As an athlete, wellness fanatic and over-the-top energetic person that I once was, advice used to roll off my tongue too easily in hopes that my words and my experience could break that person out of their illness prison. And now the shoe is on the other foot.
I’ve learned to stop offering up opinion about illnesses I know nothing of. That’s not to say I don’t appreciate some of the advice provided by those in the Lyme community and even empathetic good friends who’ve cared enough to stay involved in my life and understand the complexity of this disease. But the truth is, this is nothing like the common cold or tips to avoid cancer or heart disease. The complexity of tick borne disease is sometimes so unimaginable to me that evening thinking about it makes my heart stop, my breath short and my eyes swell up with tears.
I can’t exercise my illness away. I can’t think it positively away. I can only open my mind, educate myself and surround myself with experienced healthcare practitioners who can guide me, logically and compassionately, on my own journey to wellness.
For the first time, I realize that each person’s road to wellness is their own journey to take. I’m learning to speak less and hear more. Maybe one day, I’ll be like that wise old bird.
The More He Saw, The Less He Spoke
While searching the internet for an explanation of some current health questions, I came across your writings of Lyme. It brought tears to my eyes and my heart breaks for you.
I hope two things ---- you ignore the wise old owl and never stop talking/writing, and your body recovers from this nightmare. You write so beautifully and speak concisely of the problems chronic Lyme sufferers face. I can't imagine how many others have read your posts and been moved, reassured and inspired to keep fighting.
I was treated for chronic Lyme for 1 1/2 years. Like you, I went through a maze of doctors to find one that was knowledgable and brave enough to take on my case, and was willing to treat me for "as long as it takes".
The multitude of symptoms I felt were unimaginable to most. Every day was a different experience in misery. There were some decent days mixed in, which despite being a cruel tease, probably made loved ones wonder "is she really sick?, she seemed fine yesterday."
Recovery did come one day, however, and over time, little by little, body strength and mental clarity returned. I wish this for you.
You are echoing many of my experiences. We (husband and I) have learned to take the attitude that people who offer up their own "cures" for my situation are actually trying to help. They don't know what to do when they hear that someone has a longterm painful problem - so they try to think of something helpful to say. We've learned, over many years, to smile and say thanks (but almost never follow up on suggestions).
It's really hard having invisible diseases. I've also learned not to offer up info about mine except if someone asks directly. Then, I answer in fairly vague terms. For me, my chronic pain is the biggest issue but my sarcoidosis/migraines is second in line. Fortunately, most people have never heard of sarcoid so I am spared their treatment ideas.
Hang in there.
I'm truly amazed at the health care professionals who choose to deny tick borne illnesses. One would expect them to have knowledge and answers, yet......
It's not only invisible illnesses that get denied. My husband wouldn't acknowledge that my wrist was fractured even when presented with the xray. I guess sometimes it's too painful to admit what you don't want to see.