Tag Archives: women and lyme

Adding Joy and Pleasure to Life, No Matter When

by Jennifer Crystal

I celebrated my 40th birthday by doing a cartwheel on a beach.

A few weeks earlier, a childhood friend and I had been bemoaning our upcoming birthdays. We agreed that we would feel better about the looming big number if we’d achieved everything we’d hoped to by this age. Back when we were 10, 15, 20, our 40th birthdays felt very far away, and we were both sure we’d be married and settled by then. Though we have each made strides in our careers and our lives, 40 doesn’t look the way we expected it to—nor does it look the same as it does for many of our contemporaries—and my friend lamented that instead of a celebration, the birthday felt like a marker of an unfortunate reality.

That’s when I decided we needed a perspective shift.

Actually, the shift was one I adopted halfway through my 39th year: to add joy and pleasure to my life in the meanwhile.

It began when another friend, newly single, announced that she was going to start dating just for fun. She ultimately wanted another long term relationship, with the right person. But she had things to work through from her old relationship, and wasn’t necessarily in a place to jump right in to something serious. That didn’t mean, though, that she couldn’t jump in to anything. She was just going to enjoy whoever came along, for whatever they brought to her life, just for the sake of that enjoyment.

Wait a minute, I thought. Why can’t I do the same thing?

For years when I was bedridden with tick-borne illnesses, my entire life had been on hold. Not just in terms of dating, but in terms of working, exercising, socializing, or doing anything else that didn’t involve taking medication or going to a doctor’s office. I was waiting. Waiting to feel well enough to walk up a flight of stairs. Waiting to get my PICC line out so I could wash my own hair. Waiting for my hands to not ache so I could type one paragraph.

During that period of recovery, I had a recurring dream. I was back at the summer camp where I got my original tick bite. It was the last day of summer, and I realized that all the boats had been put away and I’d never had a chance to waterski. My therapist analyzed this dream as a fear of missing the summer of my life. By losing my prime years to illness, I worried I would miss that prime entirely. The therapist reminded me that I was simply on a different track than my peers, and that my prime would come later, when I was healthier.

She also helped me to see that I was missing fun. From that point on, I tried to add enjoyment to to my life, even though I couldn’t do most of the things I had once considered fun: waterskiing, skiing, going out with friends. But I worked with friends to bring the fun to me. When I was well enough to go out to lunch, a friend and I went to an outdoor place by a harbor, so I could enjoy the feeling of being by the water. Another friend took me for a drive and had me describe to him what it was like to drive the ski boat I once had at camp. He took me to a ski movie, so I could at least participate in that life in some way.

I didn’t enjoy those moments as much as I could have, because I was still waiting. Waiting to be able to do those activities for real.

As I got better, I was able to actually ski, to try new water activities like paddle-boarding, to learn to bike in an adaptive way. I hosted parties and board game nights and went out with dear friends, not to the extent I once had, but certainly in a manner that added a lot of fun to a life that had previously been constricted by illness.

But it wasn’t until my friend made her “dating just for fun” announcement that I realized that despite these additions to my life, I was still in a waiting state. I’d still been denying myself certain pleasures, because I have to be so careful about my limitations. And also because I was waiting to do things like go on vacation, until I felt fully secure in my career and met someone to travel to a romantic destination with. I was waiting to meet that right person, who would fully understand my limitations and would be willing to build a life together in light of them.

I still do strive for those things. But I’ve lost enough years of my life. Why should I deny myself joy and pleasure while I wait? Lyme disease or not, there are no guarantees; none of us know if we’re going to be here tomorrow. So, like my newly single friend, I decided that I, too, was allowed to just enjoy life starting that very day.

I, too, started dating just for fun. What a relief of pressure, to date someone just because I enjoyed their company, even if I knew he wasn’t The One. To my friend who was lamenting our upcoming birthdays, I suggested a beach vacation that worked within my limitations (two hours away, and on a strict  budget). What a pleasure it was to just enjoy our time on the beach together! To celebrate the fact that we’ve made it to 40, and survived all that we have, and are here to enjoy it now.

On our second day on vacation, I noticed that a number of kids were doing cartwheels in the sand. “I bet I can still do that,” I announced, and without thinking, I just stood up and did one. Not perfectly—I didn’t stick the landing—but even as I fell over in the sand, I was laughing hysterically.

“Why would you do a cartwheel?!” my mother asked when I sent her the video later. Undoubtedly she was worried that acrobatics would take too much energy for me and set off a flare of my Lyme disease, or that I’d re-injure the knee I’d had repaired years before.

To be honest, I didn’t think about either of those concerns before I did the cartwheel. I just did it, because I knew I could. And, as I told my mother, “because all the other kids on the beach were doing it.”

I may be 40. I may still have Lyme and other tick-borne illnesses. I may still be waiting for certain pieces of my life to fall in to place. But  I’m not going to wait to have fun.

jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Gender and Lyme: Is Tick-Borne Disease Different for Women?

by Jennifer Crystal

Every Thursday evening, three girl friends come over to eat ice cream with me and watch Grey’s Anatomy. Yes, that show is still on! Despite the fact that it’s been running for 14 seasons, it often makes some commentary on current social issues. In one recent episode, the Chief of Surgery, Dr. Bailey, checks herself in to the hospital because she believes she is having a heart attack. But because her tests initially come back clean—she suffers from Obsessive Compulsive Disorder (OCD) and is under tremendous stress— she grows increasingly upset when her male doctors won’t listen to her, and her symptoms are written off as psychosomatic.

Does this scenario sound at all familiar?

Dr. Bailey’s experience is one that too many female patients go through—not just women with Lyme, but women with any illness. In her March 2013 New York Times article, “The Gender Gap in Pain”, award-winning health writer Laurie Edwards cites several studies that prove that women’s complaints of pain are much more likely to be dismissed than men’s. For Lyme patients, the complaints are not just about pain, but also about brain fog, word reiteration, forgetfulness, heart palpitations, insomnia, and that particularly nebulous one, fatigue. Because Lyme symptoms can seem idiopathic—meaning they arise spontaneously from unknown causes— and do sometimes encompass a psychological component, it’s easy for doctors to write them off as “all in someone’s head.”This especially occurs when faulty diagnostic tests can’t support what a patient knows to be true: that she is physically ill with an all too real pathogen. Women who appear in doctor’s offices wearing makeup or hairstyles that mask how awful they really feel are often told, “But you don’t look sick!”

If women are louder with their complaints, it’s only because they’re not being heard. A patient recently wrote to me to ask if Lyme is more common in women, because all of the other patients in the waiting room of a doctor she recently visited were female. Perhaps those females had legitimate tick-borne illnesses that had been dismissed longer than their male counterparts’, and they had finally made their way to a Lyme Literate Medical Doctor (LLMD). Whatever the reason, medical research demonstrates that more men than women test positive for Lyme disease. A study by Dr. John Aucott of Johns Hopkins University found that when testing for Lyme—with tests that are, admittedly, less than 60% accurate—women’s and men’s antibody responses were different, and more men than women tested positive.

Does this mean more men than women actually have Lyme disease? That’s hard to know, since the tests are so unreliable. What it does mean though is that men have a greater chance of having their symptoms confirmed by clinical tests, while women face a greater uphill battle in getting accurately diagnosed. Some have to wander around for years—it took me eight years, battling both male and female doctors—to be taken seriously. Even on Grey’s Anatomy, the fictional Dr. Bailey had to collapse on the hospital floor before her doctors would admit she might actually be suffering a heart attack, and whisked her in to surgery.

In addition to more men than women being diagnosed with Lyme disease, women face different challenges from the illness. My own symptoms always increase during menstruation, when the hormones progesterone and estrogen diminish. I have a higher chance of getting a migraine than a male, and my fatigue and sleep disturbances are worse during those few days. Doctors and patients alike agree that many, many women say the same thing. Women also have to contend with the possibility of yeast infections from antibiotic treatment for Lyme. Yeast overgrowth can be a problem for any gender, as antibiotics not countered by probiotics and a special diet can cause intestinal yeast overgrowth, but women also have the added potential of vaginal yeast infection.  And of course, women who contract Lyme while pregnant must work with their doctors to manage their own health while trying to avoid passing the Lyme bacterium to the fetus; women who already have Lyme and become pregnant have similar concerns.

Don’t forget that ticks do not discriminate. They will bite anyone of any gender. But  women who get tick-borne illness as a result do often face discrimination when it comes to being validated, diagnosed, and treated by physicians. Once accurately diagnosed, women face different complications than men.

For now, women can’t do much about the fact that menses can worsen our symptoms, or that we are more susceptible to yeast infections, or that Lyme can affect pregnancy. We can, however, speak up for ourselves and for our illnesses. We can push back against doctors who won’t listen, or go elsewhere to find better medical care. We can also fight against the psychosomatic write-offs of Lyme sufferers. And we can share our stories, bonding together in a movement to earn validation and respect for all patients.

jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]