Real and inspiring voices of the chronic illness community

By Jenny Lelwica Buttaccio
Posted 12/13/19

In 2006, Christina Kovacs graduated high school at the age of 17. That summer, as she eagerly awaited going to college, she came down with a case of the “summertime flu.”

Her symptoms lingered, and she was placed on antibiotics; they helped her somewhat, though they weren’t specific to Lyme disease. Growing up in Kentucky, tick-borne diseases simply weren’t on the radar for most healthcare professionals, though she spent her summer days playing outside and in wooded areas with friends.

At summer’s end, despite never fully rebounding from her flu, she headed off to college for what she hoped would be a happy time in her life. But Christina was in for a shock. Her college years would be marked by unexplained, debilitating symptoms with very few answers as to what was causing her illness.

Recently, we talked to Christina, a designer, blogger, and the force behind the long-running and exceptionally informative blog, Lady of Lyme. Here, she shares with us about having to put college and her career goals on hold to focus on improving her health.

In many ways, her story is a familiar and disheartening theme among Lyme patients. But how you cope with what life throws at you can be the difference between an identity consumed with illness or one that thrives in addition to it. Through resilience and perseverance, here’s how Christina has learned how to thrive and achieve her goals.

RawlsMD (RMD): You mentioned you never quite returned to health after your bout of summer flu. When did your symptoms begin significantly impacting your quality of life?

Christina Kovacs: During my first semester at college, I was so run down that I got tested for mono (mononucleosis) at least three times; the tests were always negative. I didn’t make the connection that I was still sick from the summer — I thought those were separate issues. I kept being told I was just run down from college, and that it’s normal.

After my first semester of college, things began to snowball. I started having intense G.I. (gastrointestinal) issues that kept me up during the night. I would call my mom crying on the bathroom floor almost every night, and I struggled to keep up with school, my job, and my social life, while also hiding my symptoms from everyone around me.

I barely got through those college years. I felt like I was hanging on by a thread. In fact, on the day of my college graduation with a psychology degree, I had terrible air hunger, but at the time, I did not know what that was because I was still undiagnosed. I just knew I was very out of breath and struggling to breathe.

I went to the ER, but they couldn’t help me; they said it was just anxiety and let me go. I barely made it across the stage, and it was such a terrifying day that should have been so joyful.

Soon after that, I decided to follow my love of design and go back to school to get my second degree in California at FIDM (Fashion Institute of Design and Merchandising). But I reached a point where I couldn’t juggle everything anymore. I was falling apart. I weighed barely 80 pounds; my dad had to move to California to help me get to class because I physically couldn’t make it myself. I had officially hit rock bottom.

RMD: That sounds very scary! At this point, you still didn’t have a diagnosis. What did the doctors think was wrong with you?

Christina: Before I knew I had Lyme, I was diagnosed with POTS. And prior to that, I was oddly diagnosed with both Hashimoto’s and Grave’s disease at the same time. I had a goiter and high antibodies for both diseases, and I had what was called “cycling” Hashimoto’s.

I was being thrown back and forth between the two. I had to have my thyroid radiated and killed off to stop the process. I was finally diagnosed with Lyme in 2011. Then, post Lyme, I have been formally diagnosed with a mast cell activation disease (mcad) and Crohn’s disease.

RMD: What motivated you to start blogging about your health challenges?

Christina: I started blogging in 2011 soon after I got my Lyme diagnosis. When I was diagnosed, it totally caught me off guard. I had no idea what Lyme disease was, and I was terrified.

I first got on some forums for guidance, and that was a terrible idea because it only scared me more. I then got online to search for blogs, because I wanted to follow someone’s journey and get some tips, but at the time, I only knew of one blog. Back in those days, health blogs were not commonplace like they are now, so I didn’t find much.

That’s when I decided I would start a blog as a way to tell my story so friends and family could follow along. Also, I could share what works for me and hopefully be of help to others.

RMD: In some of your earlier blog posts, you expressed how it was challenging to have an illness where everyone thought you looked fine, so therefore, you must be fine. How did you explain to friends and family what was going on with you?

Christina: Oh, boy! This was extremely tough for me. By nature, I am someone who will put on a façade, even when I am in pain, and act like I’m fine. It puts you in a very vulnerable position to let that wall down and show others the nitty-gritty truth of how sick you are.

I wanted my friends to grasp the depth of hell that Lyme can send you to, but at the same time, it was difficult to let anyone in. I didn’t even let my then long-term boyfriend in. I let no one but my immediate family see me in those dark moments.

A lot of it was because even when I did go to doctors and show my pain, they told me I did not look sick enough, and I was fine. This made me fearful that my friends wouldn’t understand, even if I did try to show them, and I was worried it would create a rift in our friendship. As much as it hurt to live a double life where no one understood my pain because I looked “fine,” it was almost easier to do than opening myself up to others and changing the dynamic of our relationship.

RMD: No matter what you said or how you acted, you probably encountered some people who still couldn’t understand how someone could be young and have a chronic illness. Have there been friends or family that you lost or distanced yourself from over the years?

Christina: Unfortunately, yes. I had some friends who told me they understood what I was going through, but as time passed, they didn’t make any effort to visit or be very supportive.

At first, I felt let down a lot, and I kept making excuses for them and putting the blame on myself. I thought that since I was the bore and the sick person, it’s no wonder they don’t want to be around me.

For the record, I now know that is completely untrue, and I learned my worth. But back then, I fought hard for those friendships while they gave me very little back in return. I finally realized it was a useless fight that only depleted me in the long run, so I cut those people off.

It was obviously difficult, but I remind myself that people can’t be who you want them to be. I couldn’t force them to do more, care more, give more. And that’s okay. The single greatest thing I learned from that situation was accepting that not every human being can give you what you need, and it doesn’t make them a monster. It just makes them a bad fit for you.

RMD: On your blog, you mention going through long seasons of being bedridden or housebound. We have readers who ask about coping with this situation, too. What age were you when this was going on, and how did you cope with the emotional aspects of going through that?

Christina: In 2012, I initially moved home with my parents and instantly crashed. I was 23 at the time. I was bedbound for years, often, being too sick to even take a shower without help. I got out of bed maybe two to three times a day, and that was it.

I coped by connecting with others on Twitter. I found such a great community on Twitter, and it made being stuck in bed bearable. I made friends my age who have become close friends who I talk to every single day — they saved me. To cope, I would recommend finding others online who understand your struggle and creating a community, so you don’t feel so isolated.

RMD: You’ve been writing about the Lyme controversy and educating others for many years about the illness. Are there some particular areas where you think we’ve finally made some progress?

Christina: When I was diagnosed with Lyme in 2011, I can honestly tell you that I had no idea what it was. The words “Lyme disease” had never been in my vocabulary nor the vocabulary of anyone around me. When I tried to explain what was wrong with me, I had to start at square one every single time. It was tedious.

Fast forward to 2019, and now everyone I tell about Lyme instantly says they either know someone who has it, has a friend or a family member who was impacted by it, or they at least have good knowledge about what it is. Today there is a much bigger spotlight being shined on this disease, so I think that education about the disease has improved greatly.

RMD: You’ve also turned to art and fashion to cope with Lyme disease and raise awareness. Can you tell me about your t-shirt designs? What made you start to design them, and what do you do with the proceeds from the sales?

Christina: I was in school at FIDM when Lyme took a wrecking ball to my life, and I had to hit pause. At heart, I love designing and creating, and I really missed that.

I first had the idea to design a shirt way back in 2014, and I worked with the Tick Borne Disease Alliance (before they became Global Lyme Alliance) to design a shirt with 100% of profits going to their continued research. The campaign went really well, and it lit a spark in me to do more in the future.

Fast forward a bit to 2016, and I had the idea to make a Christmas themed shirt that had a nod to Lyme disease awareness. So that year, I made a shirt with tiny, lime-green Lyme awareness ribbons that created a Christmas tree.

The following year, I had another design with a cocktail glass and a small awareness ribbon that said, “cheers to a cure!” In 2018, I opted for a Thanksgiving fall-themed holiday shirt, which had watercolor pumpkins on it and tiny Lyme awareness ribbons as the stem.

I have had so much fun creating new ideas, and 100% of every single item sold always went to a Lyme charity. I’ve worked both with Global Lyme Alliance and the LymeLight Foundation on these!

RMD: That’s amazing! As far as your health, how would you say you’re feeling most days?

Christina: Gosh, this is such a difficult question to answer! I know I have made a lot of progress. It’s been slow, and at one point in 2015, I relapsed hard. After that, it was 100 times more difficult to climb out.

Recently, I hit a huge life goal when I was able to re-enroll in school to finish my degree from FIDM, and I have been working really hard to balance school and my health in a way that I don’t cause another relapse. But the fact that cognitively I have been able to get through it has been such an achievement for me.

In my darkest moments, I never thought I would see this day. So, to answer your question, I would say I’m maybe 50-60% back to normal. And it’s strange that I don’t say that and feel more elated, but when you have been fighting for so long, and you still struggle to find the energy to get through all the things you used to do so easily, it’s disheartening.

Sometimes I question if 100% is a realistic goal, or how much of this will have to be something I learn to live with while I accept that I’ll never be as well as I once was.

RMD: It certainly is a long road — no doubt. What advice do you have for a person who’s newly diagnosed with Lyme? Where do they begin?

Christina: Whatever you do, don’t go on forums! Haha, kidding — sort of. Forums are often where people go for advice, but you just end up finding a lot of people with the same problem and no solution. And when you’re newly diagnosed, it can be terrifying and not at all comforting to hear Jennifer from Nebraska tell you that she’s been at this for 20 years and isn’t any better.

One of the best things I did very early in my journey was to read a book by Katina Makris called Out of the Woods. It’s a very poignant story that goes into the depths of hell that Katina was in while fighting Lyme, including losing her job, her family, her whole life. Then, you get to see how she emerges from that stronger and better than ever. That book gave me hope that I so desperately needed. I would recommend that book to anyone.

Outside of that, I always point people to Lymedisease.org, RawlsMD, and Global Lyme Alliance for technical info. And I encourage them to join Twitter or Instagram to build a community.

More about Christina: Christina Kovacs is a Lyme disease advocate and blogger at Lady of Lyme. You can shop for her Lyme awareness t-shirts on her website. Follow her on Twitter at Lady of Lyme and Instagram at ladyoflyme.