With celebrities such as Avril Lavigne, Alec Baldwin and, more recently, Yolanda and Bella Hadid opening up about their struggles with Lyme disease, you might be surprised to learn that the first recorded case of Lyme disease goes back to 1975. Yet, 46 years later, there is still stunningly little reconcilable information on the tick-borne illness to be found.
Symptoms, which include fatigue, muscle pain and serious memory impairment, can become chronic, significantly impacting a patient’s quality of life. It has even led some to contemplate suicide. It’s all the more surprising, then, that there is still no agreed-upon treatment to speak of. What’s more, for a disease so prevalent and menacing, it has received relatively little media attention.
“We have to turn our mess into a message. By sharing the uncomfortable parts of our lives, we have the power to raise awareness”
Much like daughter Bella Hadid, who recently went public about her battle against Lyme on her Instagram Stories, Yolanda, 57, is now hoping to take the lid off what she calls an “invisible disease”. In conversation with Vogue, the former The Real Housewives of Beverly Hills star opened up about her personal struggles, sharing glimpses of her darkest hour and offering hope for a brighter future.
Thank you for sharing your story with us, Yolanda. How are you feeling?
I’m doing really well at the moment, knock on wood! As you know, there is no known cure for chronic Lyme disease, so being in remission is a blessing I cherish every day.
Disease-carrying ticks are common in large parts of the world. Why do you think many of us are still so unaware of the prevalence and seriousness of Lyme disease?
It comes down to a lack of education. Right now, the proper diagnosis and treatment of Lyme disease are hindered by three key factors: the lack of a uniform case definition that adequately reflects the clinical presentation of the disease; poor laboratory test sensitivity [a test’s ability to designate an individual with a disease as positive]; and high treatment-failure rates.
In light of the fact that there isn’t much public discourse on Lyme, it’s all the more admirable that you and, more recently, Bella, have opened up about your struggles. What made you both decide to speak candidly about this?
I always say that we have to turn our mess into a message. We’re both convinced that we shouldn’t just use our platforms to post selfies. We also try to use them as amplifiers to give a voice to those who can’t be heard. By sharing the more uncomfortable parts of our lives, we have the power to raise awareness.
In addition to Bella and yourself, there’s a third person in your family suffering from Lyme—Anwar. Do you have any idea where the three of you might have contracted it?
My children grew up on a farm in Santa Barbara, California, riding horses and spending a lot of time in nature. We never noticed any ticks or bull’s-eye rashes on us, but we’ll never know for sure.
Could you tell us a bit about your diagnosis and symptoms?
I used to be a multitasking, single mother-of-three and social butterfly who, slowly, started to lose her magical powers. My symptoms included severe fatigue, brain fog, memory loss, difficulty with word retrieval, anxiety, insomnia, migraines, joint pain, muscle weakness, intolerance to bright light, flu-like symptoms, swollen lymph nodes, and slight Bell’s palsy in my face — all of which left me feeling depressed.
My body sent me early warning signs, but my type-A personality didn’t leave me much room to be vulnerable with myself. I fought tooth and nail to keep things together in front of my family and friends, but as things got progressively worse, there was no hiding from the truth any more. I was eventually diagnosed by a doctor in Belgium.
“This disease brought me to my knees. Many nights I wished to die, and prayed I would just be free of the pain”
You’ve referred to Lyme disease as an “invisible disability” and there does appear to be a tendency for sufferers to not always be taken entirely seriously.
Like with many chronic diseases and mental health issues, the unfortunate truth is that you appear to be healthy on the outside, which is difficult for people to reconcile. It’s much easier for us to have compassion for somebody with visible external symptoms. Most people still don’t seem to believe that chronic Lyme disease even exists. As the saying goes: you don’t truly get it until you get it.
How have you, Bella and Anwar’s diagnoses impacted the way in which you approach your work, your relationships and your lives in general?
My decade-long journey was an absolute nightmare, but my diagnosis taught me a lot about life; about how much patience and dedication are needed in order to survive. My ‘new normal’ is much slower and more in tune with who I am. I’ve also learned to love my authentic self with all my imperfections. I’m grateful for every moment I get to spend on this planet with family and friends. Looking back, all those difficult times in my life were blessings in disguise.
You were once quoted as saying you had reached a point where you couldn’t contemplate living another day. What is the fuel that keeps you going?
I can’t begin to describe the darkness, the pain and the hell I lived through every day. For some time, it didn’t even feel like living at all. This disease brought me to my knees. Many nights I wished to die, and prayed I would just be free of the pain. If it weren’t for my children, I don’t think I would be here today. It’s so important we learn to listen to people, as many of us are suffering in silence. We should learn not to judge how somebody feels by the way they look on the outside.
My life is far from perfect, but I try to keep things in balance. I make sure to get enough sleep, eat organic food as much as possible, I practise yoga and I meditate every day. I also sleep with a wellness device called the WAVE 1 by FREmedica. It’s a wearable device that communicates with the body’s cells through LED light for wellness management. The combination of all these things has me currently living without most of my chronic symptoms. The emotional and spiritual part of healing is equally as important as the medical diagnosis. My heart is very full. Life has blessed me with an extraordinary partner who has made me believe in love again.
Is there anything you would like to share with our readers who might be struggling with the same fate or interested in learning more?
I wrote a book about my health journey called Believe Me (Macmillan, 2018), which might provide some hope for those battling this disease by themselves. I delve into some pretty uncomfortable topics that aren’t often discussed, like implant disease, ‘explant’ surgery, dental issues, heavy metals and parasites.
My heart is filled with compassion and respect for each and every person courageously battling this life-altering disease. Remember: you are not alone. We must continue to fight this, together, one day at a time until a cure is found that is both accessible and affordable to all.
For more information on Lyme disease, visit Lyme Disease Action