My family was plunged into the long, unending, mind-bending rabbit hole of chronic Lyme disease in the fall of 2012. As soon as we entered, we knew that nothing – and I do mean nothing — would ever be the same.
This Rabbit Hole Called Chronic Lyme Disease
Looking back at my son’s health history, he began to show signs of this disease in his last semester at college. Some emotional dysregulation (for a guy who is always calm and grounded). Outsized anxiety. Rapid hair loss. But we explained it away as situational –– a stressful transition from campus life to adult life in NYC.
Now, of course, I know better.
I now know that his immune system was compromised back then, accounting for those early, subtle signs. He could have been bitten by a Lyme-carrying tick in college. Or he could have been bitten during his teen years at camp. We’ll never know. In fact, the majority of chronic Lyme sufferers never see the tick that bites them.The majority of chronic Lyme sufferers never see the tick that bites them.Click To Tweet
For years now, I’ve been his research partner on this medical odyssey, learning, seeking, and trying to make some sense of his condition. Years into this rabbit hole of research and misinformation and medical conundrums, we continue to work side by side to help him fully recover his health.
Why is it that we had to figure it out on our own?
That’s easy to answer. Because mainstream medicine, for forty years, has chosen to believe that there is no such thing as chronic Lyme disease. As their rhetoric goes, ‘Lyme disease is nothing more than a nuisance condition that can be treated easily with a few weeks of antibiotics. And then, you’re good as new.’
Nothing – and again I do mean nothing – could be further from the truth.
Lessons Learned from Chronic Lyme Disease
What I’ve learned in the years that have followed, in the co-navigation of my son’s medical odyssey, in all the research I did for my newly published book Lyme Madness, in my daily work as a global activist for this cause, only one thing is certain. That what most of our doctors know about Lyme disease is driven by a forty-year foundation of falsehoods.
What I’ve learned is so multi-layered, complex, overwhelming, and headshaking that it became the driving force behind my book. I wanted to spread this message far and wide so that others wouldn’t have to suffer as my son did. And not feel so alone.
What I know for sure:
- Chronic Lyme disease is EASY to catch, DIFFICULT to diagnose, and VERY DIFFICULT (and costly) to treat.
- It is often a ‘do-it-yourself disease’ (as coined by Kris Newby of Under Our Skin documentary fame), requiring you to be your own neurologist, microbiologist, rheumatologist, cardiologist, nephrologist, internist, researcher, sleuth, and more.
- Doctors who ‘believe’ in chronic Lyme disease and are willing and able to support this community are difficult to find. But they are out there and for that, we’re very grateful.
- Chronic Lyme disease sufferers are victimized every day…in so many ways
- by the disease itself
- by doctors who turn their backs
- by loved ones who roll their eyes and walk away
- by insurers who refuse to provide coverage
- by the CDC and IDSA who together say that chronic Lyme does not exist
How to Adopt a Mindset of Strength and Empowerment
Lyme sufferers don’t want to remain victims. Who really does? What they want is for someone to listen, to care, to understand, to offer viable solutions, to help them get better. As human beings, we are wired to thrive, not merely survive.
So how does a Lyme sufferer relinquish a victim mindset and adopt one of strength and empowerment when struggling with a disease that affects mood and cognition, and wreaks havoc in so many ways? How does someone live every day experiencing pain, disease, and suffering, and not let their anger and outrage destroy them?
It’s not easy. But finding space for hope and comfort is necessary.
- Seek out a medical professional who actually ‘gets it’ and cares. Granted, these doctors can be hard to find, but they are out there – they do exist.
- Ask your loved ones to read or watch a good resource or two on what it feels like to have chronic Lyme so they can step into your shoes for just a moment.
- Know that as much as there are seemingly immovable obstacles preventing you from getting well; there are new ideas, research, and protocols being pursued to help you find relief.
- Realize there is tremendous power in connection. Dr. Edward Hallowell calls it a big dose of Vitamin ‘C’ — a vital prescription that can open your heart and deepen your soul. Find ways to connect with others who ‘get it’ so you will feel less alone. The loneliness and isolation of living with chronic Lyme can sometimes be as painful as the disease itself. Look for ‘in-person’ and/or ‘on-line’ support groups with people who are there to help you, who are open to sharing and supporting your pain and suffering.
My way of coping, of staying ‘sane’ these past several years has been to write Lyme Madness. It has provided my son and me with the power of connection and community with other Lyme sufferers. It has helped us find a way out of this rabbit hole, together, so we can graciously carry the grief that persists.
Don’t let the multiple layers of chronic Lyme disease keep you from finding the support and care you need. Support, care, and connection are your human rights and can be yours in places you haven’t yet discovered.
Keep looking for the light in the darkness. Believe it or not, it’s always there.
Disclaimer: The information contained on this site is intended for educational purposes ONLY and is not a substitute for advice, diagnosis, or treatment by your physician. It is not meant to cover all possible precautions, drug interactions, circumstances, or adverse effects. You should seek prompt medical care for any health issues and consult your doctor before taking supplements or making a change to your medications, diet, or exercise regimen. The views and opinions expressed in this article are those of the author and do not necessarily reflect those of Mastering Health & Happiness or Amy Stenehjem, M.D. Read our full disclaimer.