Real and inspiring voices of the chronic illness community

By Jenny Lelwica Buttaccio
Posted 10/17/19

(Content Notice: Please be aware that this article contains content about self-harm, suicide, and a suicide attempt. If you’re contemplating suicide, please call the National Suicide Prevention Lifeline at 1-800-273-8255 or dial 911. These services provide free, confidential support 24 hours/day, and can assist you with finding the resources you need to get help.)

Although chronic Lyme disease is difficult for patients who endure it, it’s also hard for the caregivers involved in the ongoing efforts to get us well. Sometimes, we forget that the devastating blows from the illness can impact the entire family.

Since 2013, mother and artist Nicki Nysven (of Nicki Lenore) has been the caregiver for her two children with Lyme disease. She and her family have experienced some gut-wrenching ups and downs with the illness, both physically and mentally. But through it all, Nicki maintains a sense of positivity that few could muster under such stressful and unimaginable circumstances.

We spoke to Nicki to get a caregiver’s perspective on how her family navigates Lyme disease and mental illness, and how she keeps her spirits up using art as a form of self-therapy. In the inspiring conversation below, she shares how she’s been able to cultivate inner happiness, raise awareness about Lyme disease, and make a difference in the lives of others — all of which translates to more patience and understanding for her children and family.

RawlsMD (RMD): Publicly, you’ve shared that you’re a mother and a caregiver of two children with Lyme disease. Can you describe the impact Lyme has had on your family?

Nicki Nysven: It most definitely has not been easy. After five years of going misdiagnosed and undiagnosed, my daughter Megan was diagnosed with Lyme disease in 2013 at the age of nine.
Early on, Megan’s symptoms were back and neck pain, tingling on her arms and shins, OCD (obsessive-compulsive disorder) symptoms, arthritic joint pain, and stomach issues.

We were so relieved to have a diagnosis, but also we were scared of the unknown. We weren’t educated about the disease. There is no proper treatment, and most doctors on the West Coast don’t believe that the disease even exists here in California.

So, the unknown was frightening. But my very good friend’s daughter was diagnosed with the tick-borne infection ehrlichiosis, and thankfully, she referred us to their LLND (Lyme-Literate Naturopathic Doctor).

Once Megan began treatment, I felt like a deer in headlights because it was seriously like walking in the dark with someone else leading you. You have to put all your trust in that person, the doctor.

Megan had become so sick that we had to take her out of sports, and she no longer was able to participate in recess. Symptoms like chronic fatigue, heel and foot pain, short-term memory loss, body temp issues, nausea, dizziness, extreme insomnia, headaches, sore throats, weak legs, anxiety, and depression popped up.

Watching my daughter’s health decline to where she no longer was able to do what she loved just broke my heart. Then, we had to make the decision to pull her out of school, and I started to homeschool her. At that point, we were going day by day; it felt like we were in survival mode. But you do what you have to do, right?

In 2015, just a few years later, my son Eric started becoming really sick, too, and he showed signs of a coinfection of Lyme disease called Babesia. Some of Eric’s initial symptoms were air hunger, chronic fatigue, stomach issues, migraines, brain fog, hip pain, insomnia, and anxiety. By that time, I was well-educated and knew exactly what to do: Take him to our LLND and get him tested! He ended up positive with Babesia.

So, there I was, a mom of two kids who have two different types of diseases, both caused by a tick bite. Our lives had completely changed by that point, and I never thought it could get any worse, but it did. I already had to watch my daughter’s childhood get taken away from her. Now, I had to watch my son’s life change drastically, too.

He went from attending high school, where he was an avid soccer player playing the club scene and varsity soccer, to being so sick that he had to go on The Home and Hospital Program through his school. His dreams of playing college soccer slipped away.

At times, it was really dark. Watching your children go through these challenges makes you feel so helpless and ask, “Why us? Why my kids?” I had to dig deep to figure out how to remain strong for my family and to fight for helping my kids get well. It wasn’t easy, but I had to figure out a way — I just had to.

No one prepares you for what to expect when you are dealing with Lyme disease or the part you play in helping. I definitely didn’t let my children see how scared I was—I had to remain calm for them, because I knew how scary it was for them.

RMD: On social media, you’ve shared that you have a saying with your kids: “Never give up.” Recently, you discussed a very terrifying and challenging situation with your daughter. Are there any parts of the story you’d like to share with our readers?

Nicki: I used that saying, “Never give up!” a lot. In the very beginning, I would tell my daughter that while we were still trying to figure out what was wrong with her. I would tell her, “I will never give up trying to find out what is wrong with you and causing all your pain.” Then, once we did find out what was causing all her pain, I would say, “Don’t give up fighting the battle, and I’ll never give up helping you fight the battle.”

Eventually, both she and Eric started to win the battle of fighting the disease physically and go into remission. It’s been four years, and Eric has mild symptoms, but he’s functioning.

However, Megan’s mental health started to decline. Due to the aftermath of Lyme, severe depression started to set in. She began to isolate herself more, her anxiety heightened, and she started self-harming to stop the pain in her head. Then, I would tell her, “Don’t give up on your life; I’ll never give up on you.”

But suicidal ideation led to an actual suicide attempt; she overdosed on a bunch of pills. She may have given up, but in a split second, she realized she didn’t want to give up and called me to tell me that she just overdosed. Now, “Never give up!” has a whole new meaning. She is fighting for her mental health to stay alive, not only her physical health.

RMD: Thank you for sharing such a frightening experience with us. For a brief moment, your daughter felt like giving up, but she still reached out to you for help. What do you think compelled her to call you? Can you tell us what actions you’ve taken to foster that open line of communication between you and your kids?

Nicki: I know now that she called a friend, and her friend said to call me. Thankfully, she did, and she had enough trust in her friend and in me to follow through with making that call. If she didn’t, then I would’ve found her dead when I got home.

Having that communication led her to trust me — the key here is communication and trust. Megan has been in therapy since she was first diagnosed to help her navigate through life dealing with Lyme disease as a young child to now dealing with her mental health, emotions, and just being a teenager.

We began family therapy once her mental health started to worsen, which I truly felt helped with her trust in us as parents, because we were able to understand more about her and what she was going through. She knew there was no judgment about her and her mental health.

Society puts a stigma on mental health. So, patients feel ashamed, like others won’t understand them. They feel they’ll be judged or defined by their diagnosis. We educated ourselves about mental health, and many people don’t — that’s a huge problem.

Megan is currently attending a treatment facility for her mental health, and we are very involved. It’s not just about her; it affects the whole family. We, as a family, need to change and learn with her to help her and our family heal.

RMD: To get your daughter the help she needs, you’ve had to work with mental health professionals who aren’t “Lyme-literate.” How have you found ways to work with people who don’t necessarily know a lot about Lyme?

Nicki: We have been incredibly fortunate to have mental health professionals who are very open to learning about Lyme and what it does to you physically and mentally. I know that so many others aren’t as fortunate as we have been.

First, I would give them reliable information and resources; the key is reliable. There is so much misinformation out there on the web that I wanted to make sure they got the right information so they could help my daughter properly.

I have learned that if health professionals in any field are not open to receiving information about Lyme to help Megan, then they aren’t going to become part of our team. It takes a team of many different professionals to help people with Lyme disease. It is complex, there is no one way to treat, and every single case is different.

RMD: What would you like other caregivers of Lyme patients, whether children or adults, to know about the mental health aspects of the illness?

Nicki: I would hope that they educate themselves about the mental health aspect of the disease. Like I mentioned before, Lyme and mental health go hand in hand.

In my opinion, it’s a whole different ball game than what the disease does to you physically. Lyme affects your brain, and my daughter had no control over it. I felt like I was losing my daughter to Lyme. Talk about feeling out of control on a whole other level! It’s like I was talking to someone other than my child; her eyes were dark and lifeless.

My experience being the mom is just trying to understand as much as I can, to not judge, to gather resources to learn, and to get the proper help needed for my children and our family. Which, in return, has tremendously helped us fail to navigate through the mental challenges of Lyme disease.

One of my daughter’s current treatments in therapy for her mental health is to learn dialectical behavioral therapy (DBT) skills. As a family, we are learning them as well. The dynamics of our family, the way we talk to each other, has changed in such a positive way. We have learned to really listen, to validate, and to be mindful of one another.

We are still learning, and it’s hard. Changing old habits is challenging and difficult, but trust me — it’s all worth it! Now, I’m finally seeing my daughter, and the light in her eyes is back. We, as a family, are stronger than ever. It takes a huge support system, and our team keeps growing, from family members to professionals.

RMD: It can be taxing to be a caregiver and keep up such a high level of morale and positivity. What gives you the strength to keep going? How do you take care of yourself?

Nicki: I have my moments for sure, and I had to learn to allow myself to feel the moments. As I mentioned, I had to dig deep to figure out how to remain strong for my family to fight for helping my kids get well. I realized I needed to change something fast, or I was going to fall into depression, and that wouldn’t help any of us.

It wasn’t easy, but instead of focusing on negatives I needed to find positives. Changing my mindset changed everything for me. One was knowing that I can’t control what tomorrow will bring, but I can control how I handle it.

I also turned to my passion—art—as a form of self-therapy. I decided to post some of my paintings on Instagram. Instagram is my positive place, where I felt like I had a bit of control to post what makes me happy, since my life felt out of control, and art makes me happy. People started showing interest in what I was posting and expressed I should sell my art. With the increasing interest, I decided to get a logo, apply for a city business license, and see what would happen organically. I did all that, and now Nicki Lenore is officially a business.

RMD: Recently, you donated a painting to the Global Lyme Alliance event in Chicago. What was it like to see one of your creations at an auction item to raise funds for research? Do you see yourself continuing to use art to assist in Lyme fundraising efforts?

Nicki: I have donated a few pieces of my artwork to help Lyme organizations raise money. It’s like my art has come full circle. Lyme disease started this journey, which was dark at times, but my art was a positive force in my life that shed light through the negativity.

My paintings have a purpose now in so many ways. Helping to raise funds for Lyme organizations like Global Lyme Alliance, I mean, words cannot describe how incredibly grateful I am.

I’m so grateful to be able to turn my passion into a purpose that helps others through the process of spreading Lyme disease awareness. I also want to spark a conversation around Lyme and mental health issues in the hopes of inspiring others to educate themselves or at least talk about mental illness.

More about Nicki: Nicki Nysven is a Lyme disease patient advocate and artist based in San Luis Obispo, California. You can check out her custom art pieces including paintings, upcycled handbags, and trucker hats on her website, Nicki Lenore, or at Ambiance boutique in Paso Robles. Follow her on Instagram at nickilenore.