I posted an image on my Lyme Madness Facebook page last week that said …
Lyme sufferers are victimized in at least FIVE different ways:
1.by the disease itself 2. by doctors who turn their backs 3. by loved ones who roll their eyes and walk away 4. by insurers who refuse to provide coverage 5. by the CDC and IDSA who together say that chronic Lyme does not exist.
In less than a week, this image reached the news feed of 88,000+ people with almost 1,000 shares. The message clearly hit a nerve.
Lyme sufferers are victims — in the true sense of the word. But I know that they don’t want to remain victims. Who really does? What they want is for someone to listen, to care, to understand their plight, to offer viable solutions, to make them well. As human beings, we are wired to thrive, not merely survive. For many Lyme sufferers, barely surviving is about all they can muster on most days — with little hope for more.
So how does a Lyme sufferer relinquish the victim mindset and adopt one of strength and empowerment when struggling with a neurological disease that affects mood and cognition and wreaks havoc daily in so many ways? How does someone live every day experiencing this indescribable level of pain, dis-ease, suffering, and punishment and not let their anger and outrage completely destroy them?
It’s not easy. This level of victimization is unprecedented and palpable. But finding space for hope and comfort is necessary for survival.
Search for and seek out a medical professional who actually ‘gets it’ and cares. Granted, these doctors are extremely hard to find but they are out there – they do exist. Plead with your loved ones to read a good resource or two on what it feels like to have chronic Lyme and have them step into your shoes for just a moment. Know that as much as there are many seemingly immovable obstacles preventing you from getting well, there are always new ideas, research and protocols being pursued by mostly non-conventional medical practitioners who are working to help you find relief.
I participated in a Lyme Conference recently in Midcoast Maine. It was a powerful experience organized by Lyme sufferers Paula Jackson Jones and Angele Rice. It was an honour to be in a room with 500+ men, women and children, all with chronic Lyme, gathered together to share and learn and explore this disease. We heard from Dr. Daniel Cameron and many other excellent speakers from all medical disciplines who offered validation, hope and encouragement. The true success of the event was in the many connections that were made.
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 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 with this miserable, life-altering disease.
Don’t let the multiple layers of victimization keep you from finding the support and care you need. Even when the medical system has let you down, support, care, and connection are your human rights and can be yours in places you haven’t yet discovered.
Lori Dennis is the author of Lyme Madness™ coming soon on Amazon.