I should not have clicked. That’s the moral of this story. If I had just been following my New Year’s resolution to avoid click-bait stories, I would have passed this article by, and been all the happier for it. But I did click. And now I’m angry at what I read.
Let’s get some things straight before we get going on this blog. Today, you will not be reading about wine. Or the latest dinner I’ve made. Or the newest trend in whiskey. Today, we are going personal. If you don’t want to go there with me, best to get off this train now. Also, it’s important to know that while I do love to buck the trend, and am most definitely my own person, and do love the Sons of Anarchy, I am at heart a herd follower. I do not believe in conspiracy theories (although I did once fall down the rabbit hole that Paul McCartney is not actually Paul McCartney, I mean the internet makes a very convincing case), I do not believe that the government is working to plot our demise, I do believe in our society’s rules and expectations. I vaccinate, I get the flu shot, I eat organic, I pick up my dog poop.
Back to the click-bait. The headline said this, “Real Housewife, Fake Disease.” It was what I will classify as an opinion piece – because it contained no actual scientific data outside of links to status quo studies – about Lyme Disease. Specifically about Yolanda Foster, the Real Housewife of Beverly Hills who has been very open about her struggle to feel well after being diagnosed with Lyme. I really try hard not to read the articles about her because it brings me back to my own, sometimes hopeless, struggle with Lyme, and I always get sucked into the comments which consist of only two things – other people’s pain because they too have been sick with Lyme, or disbelieving comments saying people with Lyme are just looking for attention. Both make me sad, and frustrated. In all, I just try not to think about Lyme disease, even though it has framed my life since the spring before we opened The Urban Grape.
I honestly couldn’t believe the tone of this click-bait article. It was degrading, patronizing, and misleading. It was written by a doctor under a pen name. I clicked through to his Twitter feed, also a pseudonym, and was blown away by his arrogance, his disregard for people’s pain, his bullying tone and his smugness. His pseudonym had given him power to be unkind in this new kind of way that we see now – the anonymous social media unkindness that I will go so far as to say is ruining our country. He wasn’t an infectious disease specialist, he was a pediatrician. So how he felt he had the right to write something so baseless, I will never know. It wasn’t until he let slip that he worked at a prominent Boston hospital that it all became perfectly clear. Because my story also starts at that same hospital. So let’s head there now.
In April 2010 I took the boys to my parents’ house on Martha’s Vineyard, what one compassionate, leading researcher in Lyme later described to me as the “Lyme Chernobyl.” TJ was in Boston, overseeing the construction of UGCH. It was unseasonably warm, and we worked outside in my mom’s garden and the boys and I played and sat in the grass most of the time we were there. Because it was off-season, my parents weren’t yet spraying for ticks around their house like they do all summer. It’s expensive, but it keeps us safe, or safer, from ticks.
About a month later, I wrote to my doctor complaining of persistent, debilitating headaches. He suggested it was stress-related because we were in the final stretch of opening UG. He prescribed me Amitryptilyne. I never took it (although, fast-forward, I do take it now).
That whole fall of 2010, I felt strange. I had sensations that I was falling backwards, my limbs felt funny, I had headaches and memory loss. It wasn’t awful, but it wasn’t right. I went to the same doctor in January 2011 and he gave me every test in the book, hoping to disprove his initial concern that I had MS. He did not give me a Lyme test. All of my tests came back negative – I was the picture of health. He told me to get more rest, try to relax and do more yoga. He said I was suffering from the exhaustion that so many new mothers feel.
I went back to him a year later. It seemed a pattern was arising – I was okay in the spring and summer, and then got sicker and sicker through the fall and holidays. By January I was a mess. We are now in January 2012. Again, every test but a Lyme test was performed. Again, I was declared fine. My doctor’s advice? Try to ask TJ to help more around the house….you seem overwhelmed.
By January of 2013 I was in agony. My jaw was practically locked shut. I had migrating joint pain – one minute in my elbow, the next in my knee. That spring my knee stopped working. I was having agonizing knee pain, but there was no diagnosis. I had no memory function. I was messing up words, confused, and had so much brain fog that I would sit at my computer for hours just staring at the screen.
And the headaches. The headaches were unbearable. I remember once begging TJ to take me to the hospital, and then remembering that we were hosting a group of women at UGSE for Smarty Boston and I was supposed to give a presentation. I got up, got dressed, put on make-up, went in and gave a killer talk to the group, cried the whole way home and had to crawl to bed. No one but TJ knew how much pain I was in. TJ and I devised a safe word that I could text to him if things were really bad and I was unable to care for the kids – “Eskimo.” I used it more than once. I would just like to pause here and say, my husband is amazing.
The summer of 2013 I retreated to my parents house after a whole new round of doctors at not one but now two major Boston hospitals could not figure out what was wrong with me. And, no. I was never given a Lyme test. The latest doctors’ advice – “Maybe you should consider an anti-depressant, you seem really down.” And “Maybe some time away would help you clear your head.” I was basically unable to care for the kids, at least not in any coherent, present, loving way. I could barely take care of myself. I was having episodes of vertigo, crushing headaches, jaw and knee pain, memory issues, fatigue, and yes, I was depressed. Honestly? Who wouldn’t be? I could barely get a doctor to believe how sick I was, much less come up with a practical solution.
On the Vineyard, I started seeing a physical therapist and acupuncturist for some pain relief. On my initial intake they both said the same thing to me, “You have Lyme Disease.” When I mentioned this to my doctor over email, it barely registered with her. All I got was a vague maybe, with a more concrete admonishment that we couldn’t chase down all the guesses of these Vineyard practitioners. I knew that to get healthy I had to get out of the major hospitals and find a whole new kind of medicine.
I will save you the tedium of how I came to advocate for myself, found a doctor who would listen to me, and get a Lyme test (guess what, it was positive). I’ll also save you the ins and outs of my treatment, but it involved several months of herbs and antibiotics. Even more painfully, it involved no alcohol. I’ll skip to the total out of pocket cost for my Lyme diagnosis and treatment – $17,000. None of which was covered by insurance, because the hospital I was affiliated with wouldn’t treat me. Or maybe it’s more fair to say didn’t know how to treat me. Which ever you choose, the result is the same.
When you have Lyme in your body for three years, undiagnosed and untreated, it wreaks havoc with your systems. I now have an aggressively auto-immune body. The easiest way to think about it, for me, is that my immune system spent so long fighting something, that now it just attacks whatever it can find. That includes my thyroid, my inner ear, who knows what else. I live in a constant state of inflammation and pain. My headaches remain, to the point that I have started getting Occipital Nerve Blocks in the nerves around my head and jaw just to get relief (I get these at the Faulkner which is like a totally different universe in terms of compassion from what I was used to). I take a low dose of amitriptilyne every night to help with my joint pain and headaches. I have to watch everything that I eat. I should be eating even better than I do. I have found most of my answers on-line and on blogs, not from the established medical doctors in Boston. A few months ago I saw a well-respected rheumatologist to see if there was anything else I should be doing to ease my pain. He told me to take fish oil and work out. He also told me that he believes I never had Lyme.
Doctors like the one who wrote this article and who gleeful mock people with Lyme on Twitter maintain that Lyme is rare – and that these rare cases are easily diagnosed, treated and cured. It seems like a game to them, to maintain that the world is flat, and that they are right because they’re “The Doctors.” As one doctor in this long, useless line of doctors said to me, “We can’t test for something we don’t believe exists.” But here is the important part – a medical system that doesn’t believe in a disease completely misses early stage cases of Lyme that can be treated and cured long before they become debilitating. These doctors are failing us long before they mock us. Their disbelief is the reason that patients are being felled by Lyme.
When I read that ridiculous article on Wednesday, I spent the rest of the day shaking. Literally shaking. I was thrown right back into the disbelief, the mocking, the being made to feel crazy. And then I decided NO. I’m not letting someone do this to me again. I am not going to let someone call this disease FAKE. I am not going to let someone call people with this disease QUACKS. I am not going to let someone refer to Lyme sufferers as CRAZIES. I am not going to let someone say that Lyme disease has no lingering effects on people. I mean, did we tell little Bobby to throw off his iron lung and get over it after Polio?
I am not going to let these people call themselves AUTHORITIES IN MEDICINE without saying this – your arrogance is having devastating effects on your patients. Your arrogance says more about you, and modern medicine, than it will ever say about people with Lyme Disease.