I have Chronic Lyme Disease.
Until recently, you may not have known what that is, but The Real Housewives of Beverly Hills star Yolanda Hadid (formerly Foster, and mother to Gigi Hadid) brought a new awareness of the disease to light as she struggled on-and-off camera with its debilitating symptoms. Other stars, including Avril Lavigne, Alec Baldwin, and Ashley Olsen followed suit, publicly detailing their agonizing experiences with diagnosis, treatment, and symptom management. They are not alone: the CDC reports that each year over 30,000 cases are reported nationwide; however, they admit that studies they conducted reported a staggering 300,000+ number of cases is more accurate.
Caused by the bite of a tick infected with Borrelia burgdorferi, spiral-shaped bacteria that moves through bodily fluids and tissues like a corkscrew, Lyme is an illness that manifests in a myriad of ways. Symptoms include, but are not limited to:
- chronic fatigue
- severe arthritis (joint pain and inflammation)
- brain fog, headaches, neurological disorders (tics, twitches, seizures)
- sensitivity to light and sound
- depression, anxiety, and other mood disorders
- fevers, skin rashes, IBS, hair loss
- muscle pain, nausea, food/chemical sensitivities
Lyme disease affects every body system and often mimics other diseases, which makes it difficult to get a diagnosis right away. For a “lucky” small percentage of people who find a tick attached to their skin or find the ‘tell-tale’ red bulls-eye rash, a course of antibiotics usually will do the trick; this is an early infection. For most, however, symptoms show up one at a time, resulting in misdiagnosis–often for years, as was my case. Eight years, to be exact.
By the time I got a positive diagnosis, I had lost almost half my hair in big round patches; I had been through a barrage of tests, including brain MRIs, ultrasounds, blood tests, cardiac testing, sleep studies, and gynecological testing (I was tested for cancer and syphilis!–the other spiral bacteria that Lyme mimics). I had two large rashes, one on each wrist that looked and felt like a chemical burn. My skin blistered up for weeks and left two discolored scars. I spent the majority of most days in bed, and on work days I struggled so hard to stay upright; the fatigue was overpowering. The entire left side of my body had been affected, causing me to wobble like a penguin when I walked. I had panic attacks, depression, and suicidal thoughts. The worst part: I became an amazing actor.
In order to keep my job, keep my family from freaking out, and avoid being ostracized in public, I had to “pretend” that I was mostly okay. As exhausting as that was, I had a massive fear of what others would think. For many months I wished for death, to be free from the prison my body had become. It was far too late for conventional medical treatment to be of any use–but I tried it anyway, to appease my doctors and family. I was despondent.
Ultimately, I began to do as much research as I could, spending hours reading online forums and blogs, watching documentaries like Under Our Skin, and connecting with others who shared my fate. I found stories of hope; people who took matters into their own hands, empowering themselves to search out natural and alternative treatments—and got inspired.
I began using holistic treatment methods that have made a difference in my life. I learned to meditate and do some simple yoga. I learned to say no to things and people that drained me of energy. I learned that food is medicine, and what you put in your body either fights disease or contributes to it. I taught my daughter to do her own laundry (that’s a victory in itself!). I learned that it is okay to take sick days from work, and that I am not indispensable; the world doesn’t stop turning if I can’t make it to work sometimes.
Once I began to look at my health from a larger perspective—a holistic (whole) perspective—I understood how to help myself get better. And it’s working, very slowly, but I can tell a difference in how I feel today versus a year ago. There are some things I’ll never be able to do, like donate blood and organs, have another baby (Lyme crosses the placenta and can be transmitted congenitally), and run a marathon, but most days I can get out of bed. I now know how to manage my disease, and I enjoy helping others learn how to manage their chronic illnesses too. Experience really is the best teacher.
Lyme disease really left me shaken for a long time; but my track record for survival thus far is 100%, and that’s pretty good.