By Jennifer Crystal
Patients often ask me when, and how much information they should disclose about their illness(es) to employers, new or casual acquaintances, or dates. While there’s no set answer to these questions, my trial-and-error experience in each realm has given me a certain measure of insight to share.
When I was first in remission from Lyme and two other tick-borne illnesses—Ehrlichia and babesia—I took a remote, part-time editorial assistant job for a magazine. I wrote and edited from home, which allowed me to make my own hours. The situation seemed perfect! I worked in the morning when my focus was best, and napped in the afternoons without anyone knowing. I didn’t tell my boss about my health situation. I worried that if she knew I had Lyme, she wouldn’t think I was capable.
My plan went well at first. I met all of my deadlines. But symptoms of my tick-borne illnesses started to return. I continued working hard, which only made my neurological symptoms worse. Before I knew it, I was in full-blown relapse. I had trouble concentrating, reading, and writing, and was bedridden with exhaustion. I had no choice but to tell my boss. I feared the worst, but her response was a pleasant surprise.
“Oh, I know you have Lyme,” she said. “I read your article about it in the college alumni magazine.” I’d forgotten that my boss had attended the same college as I had, which meant she would have seen an essay I’d published about my medical experience. “I’m so amazed with how much work you’ve been able to do in spite of all you’ve been through,” she said. She offered to lighten my workload, and then gave me (unpaid) time off so I could recuperate.
I was very lucky. Not every boss would have reacted the same way, and not everyone can afford unpaid leave. It’s important to find out in advance what a company’s medical leave policy consists of, which you should be able to do without actually disclosing your situation. How much you disclose and when you disclose it also depends on whether you are legally considered disabled, which earns you rights that patients without that official stamp don’t have.
Since achieving remission once more, I’ve had to think outside the box about employment that works within my needs. I now combine writing gigs that I can do from home with classes that I can teach at times of day that work for me. My current employers know my situation since I write about it publicly, and that allows us to talk openly when I do need any accommodation.
Remember, always, that Lyme is not your fault. You are trying to work in spite of it, which shows determination and effort, not weakness.
During my first period of remission just described, I attended a birthday party of an acquaintance. I knew hardly anyone there. When someone asked what I’d been doing before starting my magazine job, I froze. The party was loud and crowded, and we were there to celebrate someone else. I did not feel it was the place to share my Lyme story, but I had been mired in illness for so long that I didn’t know what else to say. We ended up having a very awkward conversation, and I left feeling embarrassed.
After that, I came up with a more pat answer to share. “Oh, I was dealing with some health issues for a while, but I’m much better now.” However, you don’t even need to share even that much information if you don’t want to. You are free to say, “I’m doing just fine, thank you” and re-direct the subject of conversation elsewhere. Have a few topics on hand: sports, the weather, what you’ve heard about a new TV show (even if you haven’t been able to watch it).
For me, Lyme comes up quickly, because as soon as people hear I’m a writer they ask, “What do you write about?” That’s when I have to consider, Is this someone with whom I’d like to share my Lyme story, and is this an appropriate place in which to do so? If I’m hesitant I simply reply, “I write for a health organization,” or “I focus on medical writing.”
The most important lesson I’ve learned when sharing with new acquaintances is to know your audience. Gauge what reaction you might get if you do share, and also gauge how comfortable you feel telling your story. Remember you don’t owe anyone an explanation; there is a lot of information they are probably choosing not to share, too.
When I first started dating with Lyme, I worried constantly about whether to tell my dates about my medical condition, or when to do so. I wanted to be honest, just as I wanted my date to be forthright with me, but I didn’t want to scare anyone away. I also didn’t want to spend the whole first date talking about Lyme when we could focus on other topics more interesting to us both.
The first lesson I learned was to choose a date location that didn’t immediately call for some sort of explanation from me. If we met for drinks, I’d order a seltzer, which would naturally lead to questions about why I wasn’t drinking. Now, if someone asks me out, I suggest ice cream or coffee, or an activity date like a walk in a park.
After gaining some dating practice, I realized I was only sharing my story if I liked the person and wanted to see them again. Otherwise, it didn’t feel it was worth it; they didn’t need to know so much personal information. Whether or not I brought up Lyme became a good indicator for whether or not my date was a good match.
I also realized that I didn’t have to share my whole story on one date or even three. I could peel back the layers of it in the same way someone might slowly share information about their family or past relationships. As someone grew closer to me, they got to know more of my medical story, yet that story became only part of the whole person they were getting to know.
It’s important to remember that everyone has “baggage”. You may be nervous about sharing about Lyme, but your date may be nervous about sharing about another medical condition, or about a divorce, or about a difficult family situation. These situations aren’t burdens. They’re experiences that make us who we are, and with the right person, we can share and even celebrate the lessons we’ve learned from them.
While there’s no right or wrong way to go about disclosing your Lyme story, the important thing to remember is that the story is yours. You have control over if or when you want to share it. It’s your truth, and you decide if someone else deserves to hear it.
Jennifer Crystal is a writer and educator in Boston. Her memoir One Tick Stopped the Clock is forthcoming. Contact her at [email protected].