Nearly half a million people are diagnosed with Lyme Disease each year, making this tick-borne illness the most common and fastest growing vector-borne disease in America.
And while numbers are still on the rise, many people are unaware of the severity of Lyme Disease since the symptoms aren’t always visible – hence, why it’s referred to as an “invisible disability.”
The 57-year-old mom of models Gigi, Bella, and Anwar Hadid and former Real Housewives of Beverly Hills star has made it her mission to raise awareness and help others fighting the Lyme Disease battle. In an exclusive interview with Thrive Global, she talks about everything from her diagnosis to how this experience changed her as a person.
It’s extremely admirable to speak openly about such a personal struggle. What inspired you to share your story?
Thank you. I feel that it would have been extremely selfish of me not to share all that I have learned about a disease that we know so little about. I made a promise to God that if I was granted my life to live, I would make it my mission to help others and be a part of finding a cure that is affordable for all.
I always say that we must turn our mess into a message. From a spiritual perspective, I believe that we were not given our platform just to post selfies. Rather, we should be a voice for those who can’t be heard and share the uncomfortable struggles we are faced with in order to bring awareness.
Let’s start from the beginning. What symptoms did you experience and when were you diagnosed? And how are you feeling now?
I used to have unlimited energy and be a multitasking single mother of three. I was a social butterfly that slowly started to lose my magical powers due to various debilitating symptoms. This included severe fatigue, brain fog, inability to focus, memory loss, difficulty with word retrieval, anxiety at night, insomnia, migraines, joint pain, muscle weakness, intolerance to bright light, non-restorative sleep, recurrent flu-like symptoms, swollen lymph nodes and slight bell’s palsy in my face – all of which left me feeling depressed and uninspired.
My body gave me early warning signs and was screaming at me to pay attention, yet I fought so long and hard to keep it all together in front of my family and friends.
My Type A personality didn’t leave much room to feel and be vulnerable with myself. I am from the old school ways of simply pulling up the bootstraps and continuing to march on. However, at some point, this doesn’t work anymore and you have to face the facts of your reality.
After many years of suffering and seeing many different doctors all over the world, I was finally diagnosed with Chronic neurological Lyme disease by Dr. Meirleir in Belgium.
We were all so relieved to finally have an explanation for the drastic decline in my life force, and thought after 90 days of IV antibiotics, I would be up and running and back to life as usual.
Little did I know, the real nightmare had just begun. My symptoms became worse and my world became smaller and smaller.
I felt lost and alone because there was no clear path, no definitive answers or protocols to a cure. The die-off that the antibiotics created was more than my body could handle. It took much of our own research to learn about the importance of detoxing, and the meaning of Herxheimer reactions.
So many things I tried failed, and this disease slowly brought me to my knees. I was left to exist in the jail of my paralyzed brain. It felt like I was being killed from the inside out, left to uncover my own murder mystery! Eventually I did, but it took me a long time. More details on my journey can be found in my book, Believe Me (available on Amazon).
Today, I’m doing really well. Unfortunately, there is no cure for chronic Lyme disease so being in remission is a blessing that I cherish every day and never take for granted. I sleep with a wellness device called the WAVE 1 by FREmedica. It’s a wearable device that houses frequency combinations that communicate with the body’s cells through LED light for wellness management. Since my introduction to the WAVE 1 technology, I have been without 95% of my chronic symptoms.
Since there aren’t always visible external symptoms for Lyme disease, many people don’t take it as seriously as other illnesses. But just because you can’t see the symptoms doesn’t make them any less real. Can you share your thoughts about this?
I believe there is not much awareness and compassion around Lyme disease due to the lack of education. The biggest struggle is that you appear normal from the outside, yet you are dying on the inside, which is very hard for people to understand. It’s much easier for us to have an emotional response and compassion for someone with a visible issue from the outside.
Battling any disease is just as much of an emotional journey as a physical one. Can you talk a bit about that?
Battling a long-term disease becomes very emotional, especially when you feel sick all of the time. The frustration of not being able to function turns into anxiety and deep depression no matter how hard you try to stay positive. It took me a long time to truly understand that 50% of the healing pie is the emotional and spiritual healing. Although I’ve worked on my spiritual awakening for decades, I never felt drawn to therapy because it wasn’t really something I grew up with. I did do ayahuasca ceremonies which I found to be a very helpful part of my healing process. But there are many layers to this process, so I recently chose an intense week-long therapy course. During the course, I was able to lay out my entire life in order to see and acknowledge the trauma that occurred in early childhood that I kind of chose to forget about (which worked until it didn’t work anymore). I never quite understood that after every emotional trauma we encounter in life, there is a physical response from our organs and immune system. So, in order to truly heal physically, we must heal emotionally.
How did this experience change you as a person?
My 10-year journey was an absolute nightmare, but it taught me so much about life in general. My new normal is much slower and more in tune with who I am. I try to live life more intelligently by consuming organic foods and all things provided by mother earth. I have learned to love the authentic me with all my imperfections, grateful for every moment I get to spend on this beautiful planet with my family and friends in a community that holds the same vibration as I do. I finally learned to create a life that feels good on the inside, not one that looks good from the outside. Today, I can truly see that the hard times in my life were all blessings in disguise.
As you continue to raise awareness about Lyme disease, what message would you like to share with people who have been recently diagnosed with this illness? Maybe something you wished you had known early on?
1. Doctors are human beings too. They make mistakes and it’s smart to explore your options and get multiple opinions as not everyone is specialized in chronic Lyme disease or able to make a Lyme diagnosis.
2. Your health journey is yours, so be your own advocate. Only you know what you are feeling.
3. Don’t let anybody tell you it’s all in your head.
4. Work strategically and educate yourself about anything and everything that could crack your case.
5. Be patient with yourself. The road is long and arduous.
6. Accept help, but have no expectations from anyone. Being sick is hard but being a caretaker of somebody you love is hard as well.
7. Many friends and loved ones will leave your life but keep in mind that those that are meant to be with you, will be there no matter what.
8. Meditate and pray daily.
9. The body wants to heal itself and will, given the right tools.
10. Keep connecting with people that are going through a similar journey.