NOT ALONE

The appearance of a disease is swift as an arrow; its disappearance slow, like a thread. ~Chinese Proverb

Last week I received numerous texts from friends:

“Did you hear? Justin Bieber has Lyme disease?”

“Did you know Justin Bieber has Lyme disease too?”

“Article in today’s Chronicle regarding Lyme Disease, did you see it?”

When I get questions like this, it feels like my family’s bout with Lyme is being validated and that we are not alone. Lyme is kind of old news for our family; although I was diagnosed a couple of years ago, unknowingly, I have been suffering from the bewildering disease, not for years, but for decades.

The rage, the brain fog, the depression, chronic inflammation and infections, the mood swings, the extreme fatigue, and swollen joints – it wasn’t until a few years after a pulmonary embolism, that I learned I had Lyme disease. Not only did I have it, but I passed it along to both of my children.

As I shared my diagnosis amongst friends, family, and colleagues, and as I began to write about my experience, many didn’t know how to respond. Some asked questions – “Are you sure?” or “How did you get it?”

Unlike Justin Bieber, when you’ve had untreated, undiagnosed, chronic Lyme disease for years and then find out about it, treatment can take years before symptoms go away. Growing up, I suffered several illnesses: mono, sinus infections, migraines, and thyroid issues, and was treated with traditional medications under the guidance of a family doctor or specialist. When it was revealed that I had Lyme, I moved to non-traditional treatment and mediations, most of which are not covered by insurance. The impact of Lyme not only took a toll on my health but on our family’s finances as well.

In addition to treatment, I started sharing details about my situation with family and friends. I began to write about my frustration with treatment, the worry I had with my kids, and how tired I was of sore joints, aches, and pains as I went through treatment and bacteria die off.

I continued to share my story and my family’s experience with Lyme to strangers at various Lyme events, and with anyone who would listen. There were many days I felt like people looked at me as if I was crazy. “Lyme? In California? I thought it was only on the East Coast?” they would say, but still, I continued to write and to share.

For me, Lyme has been a long and lonely road. Lyme symptoms vary from person to person. Friends disappear, Lyme may be the center of my world, but it certainly isn’t the center of theirs. Bills continue to pile up and the idea that maybe, just maybe, one day, insurance will cover more of the costs, inspires you to not give up.

The Kay Hagan Tick Act was signed into law last month, there has been talk about a vaccine, and there are more stories about people being diagnosed with Lyme disease. Now I don’t feel so alone.

It’s been two years since my kids and I were diagnosed, but over the course of those two years, people have reached out – “My daughter was bitten by a tick, what do I do?” – and “I just removed a tick from my husband’s arm. How do I know if he has Lyme?” – I feel like I am finally being heard, and that feels good.

I hope Justin, Avril, Alec, and all the other celebrities who have Lyme continue to share their stories – they command a much bigger audience than me – perhaps they can pave the way to bring attention to Lyme disease and do the heavy lifting so that health care providers have better ways to diagnose and treat Lyme, and so insurance companies provide better coverage.

In the meantime, I will continue to share my stories, my insights, and what I’ve learned. If I can help one person, then I’ve done my job.