What Women Who’ve Had Lyme Disease Want You To Know About It

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The three times in my life I have been diagnosed with Lyme disease, I was lucky. I was lucky I lived in a community where people knew what Lyme disease was (I grew up an hour away from Lyme, Connecticut, where it was first discovered). I was lucky I knew what to look for (a red, bullseye-shaped rash). And I was lucky to catch the disease relatively quickly, when it has the best chance of being treated with a quick course of antibiotics.

Not all people who develop Lyme disease — a tick-borne bacterial infection that can cause fatigue, joint pain, and flu-like symptoms, among other effects — are so lucky. Though the disease has become more widespread outside of the northeast since it was discovered in the ‘70s, awareness around the disease has not spread as quickly. A common theme for people who live with Lyme disease is having to search for doctors who won't dismiss their symptoms as a function of medical gender bias — or bias against the different forms of Lyme itself.

“Based on clinical studies, there are more women diagnosed with Lyme disease compared to men,” Dr. Robert Segal, co-founder of LabFinder.com, tells Bustle, and this is especially true of lingering Lyme infections such as chronic Lyme disease (CLD) or post-treatment Lyme disease syndrome (PTLDS). (Chronic Lyme is generally understood to mean when the disease is not caught early, and the bacteria has spread throughout the body. PTLDS happens when symptoms of Lyme disease persist after being treated with conventional methods.) But diagnosing lyme itself accurately, especially a potential case of chronic lyme, can be tricky.

“Chronic lyme has really been the focal point of the controversy, and I think the reason it is is because it's become a misunderstood term that means different things to different people,” Dr. John Aucott, M.D. associate professor of medicine and director of the Johns Hopkins Lyme Disease Research Center, previously told Bustle. Because of these discrepancies, it’s difficult for people who may have early lyme, chronic lyme, or PTLDS to obtain the care they need — or even explain their disease to others.

When singer Avril Lavigne opened up about living with Lyme in an interview with Billboard, it was an important step in raising awareness around the disease and the complications that come with treating it. “I’m achy, I’m fatigued, I cannot get the fuck out of bed — what the fuck is wrong with me?” she told Billboard, describing her symptoms. And many other people with the disease undergo a similar journey trying to define their symptoms and find appropriate treatment. Bustle spoke with three women about their experiences with Lyme disease, and what they wish people knew about it.

Haley Velasco, 25

I was diagnosed with Lyme during the summer of 2012 as a rising college sophomore. The diagnosis part was the toughest. I spent the summer working as a camp counselor and didn’t develop a traditional bullseye rash so the doctor thought it was a fungal infection on my stomach at first. However, my mom, who has had Lyme before, insisted that I get a blood test, which came back positive. I think that’s the scariest part of the whole thing that I wouldn’t have been treated so immediately [if my mother hadn’t insisted].
When I had Lyme, it made my joints hurt very badly. My entire body felt sore all the time and I was much more lethargic than normal.
I think people were shocked [to learn] that [Lyme disease is] so easy to get. You don’t have to be an outdoors person or anything of the sort to get infected. I would like people to know more about the symptoms of Lyme and that everyone’s body can react differently. I hope that the notion that if you don’t have a bullseye rash, then you don’t have it can be discarded. For all three of us who have it in my family, not one of us had the bullseye rash.

Olivia Spring, 21

I was diagnosed with chronic Lyme disease when I was 13, a year and a half after first getting sick. The experience of navigating doctors was very traumatic, especially at such a young age when I was also missing out on school, social events, and [losing] friends. My family doctor said I just had a virus that would pass, and did some blood work that all came back as normal. As time went on and I didn’t get any better, I was referred to several other doctors who all said there was nothing wrong with me. Many doctors said I just needed to suck it up and go back to school, that it was all in my head, and I was just depressed. It was very invalidating, and for a long time I had no explanation to give people for why I was missing school, which just made me feel like a freak with some weird illness no one could help me with. Eventually I was diagnosed by a Lyme-literate doctor through more specific blood tests.
[Having Lyme] was a very isolating experience because no one could really help me and no one knew what to say or do. My main symptom was debilitating and sometimes paralyzing fatigue, which is hard to communicate with people because it is usually just perceived as a feeling of being tired that everyone deals with. I would sleep for 10 to 20 hours and be unable to get out of bed a lot. I had horrible leg and joint pain, trouble staying awake, concentrating, reading, and doing any kind of work. But it was also unpredictable. I would be home from school for a week, but a classmate would see me out with my mom on the weekend and tell all my classmates that I was faking being sick, when I obviously wasn’t.
To this day, I am shocked by how many people seem unable to take my illness seriously because of how I appear physically. There is no physical indication that I am suffering from a chronic illness, just as there aren’t for many other diseases and mental illnesses. But for some reason, even after I explain the severity of it, people still have a hard time believing me. They assume it "must not be that bad," or make comments about how good and healthy I look. It makes me constantly feel like I have to prove my illness, and I shouldn’t have to do that.

Kerissa Bearce, 38

I was diagnosed with Lyme disease in March of 2013. In August of 2012, I woke up with a crazy headache that I couldn't end up shaking. I was in excruciating pain. From August to March, I saw at least 40 doctors, if not more. Prior to that, I was a marathon running lady living in Austin, Texas. All of a sudden, I couldn't get out of bed. My joints hurt, a doctor diagnosed me with peripheral neuropathy, which I continued to have through most of the next few years. Headache doctors diagnosed me with every headache thing you could think of.
Someone mentioned the word Lyme to me, and I called an infectious disease doctor who laughed at me and said, "There's no Lyme in Texas." After the last headache doctor diagnosed me with Near Daily Persistent Headache (NDPH) and said I'd "just have to live with it," I started doing more research. I found some articles about links between Lyme and NDPH and then learned about how controversial it is to have Lyme. I had traveled to 30 states on a road trip the year before, camped in tick-endemic areas with no bug spray and DID have a summer cold when I got back. [I] found a doctor about an hour from me that also did not take insurance that is called an LLMD or Lyme Literate Medical Doctor. We sent my blood to IGeneX, he took a clinical history, and I was diagnosed with Lyme.
I try not to think about my time in treatment, because I was in constant pain 100 percent of the time. It was exciting to be diagnosed and know it was actually right, but then you start taking antibiotics and feel like total and absolute crap. I had a constant headache for 3.5 years, could barely keep my eyes open half the day, even though I had to work full time, my legs tingled and burned, my joints ached, and I just did not want to get out of bed. Not to mention the mental health aspects of being a "sick person" in your early 30s. It was a lot. It still is a lot mentally.
When my cool friends saw The Punk Singer with Kathleen Hanna [which details the singer's experience with Lyme disease], I think they got it a little more. I had one person tell me that it was unresolved grief from a friend dying, and another tell me they couldn't deal with my whole "sick thing." But I also had a lot of people show up. Or send me care packages. Or sit with me and let me cry. I am lucky in that most of the doctors I've seen since that I do tell [about my history of Lyme] have had someone they know who has had it. But some doctors, I just don't tell. It's not worth arguing with them.
I just wish it was more clear cut. Clear cut that it's real and that people suffer from it. Clear cut in diagnosis. I see so many people with illnesses that mimic Lyme but they take whatever other diagnosis their doctor gives when they may have Lyme.

Lyme is profoundly misunderstood, by the general public as well as by some members of the medical community. By raising awareness around how Lyme disease affects people, more research can be done to get to the bottom of this debilitating disease.