The Centers for Disease Control and Prevention report that more than 300,000 people are infected with Lyme disease each year, which works out to 822 new cases a day. Ally Hilfiger, daughter of fashion designer Tommy Hilfiger and author of the new memoir, Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me, shares what it’s like to live with the debilitating condition.
I was bitten by a tick when I was 7 years old. I was on summer vacation with my family, my mum removed the tick, and that was it. Little did I know then how that moment would change the course of my life forever. I didn’t realise it until many, many years later, but the symptoms I started experiencing soon after were all signs I had Lyme disease.
When I went back to school in the fall, I remember my legs hurting so much. I complained about it because it was such an unusual, abnormal pain. The kids in my school—Sacred Heart in Manhattan—would make fun of me. I used to stretch my legs a lot, and kick my heels up to my butt, to try to make the pain go away. They’d call me frog legs.
Ally on her way to school.
I was also getting strep throat a lot. I remember my parents bringing me to the doctor, and him saying that it was growing pains. I felt like a freak. I felt like I was a weak person and that maybe I was just an over-complainer. I felt like that for a lot of my life, really.
Fast-forward 10 years: I started filming the show Rich Girls for MTV when I was 18. I didn’t know what I was getting myself into—reality TV wasn’t even a big thing back then. I was still dealing with all of these physical symptoms—and I know now that the Lyme disease was going into my brain (yep, it can cause neurological issues). I was just moving through the motions. After filming stopped, everything started crumbling down. I think the stress from filming and producing the show—we taped upwards of 10 hours a day, six days a week, for five months—hurt me.
I finished filming the show in early September 2003, and I had a breakdown around the holidays. It was really scary for both me and my parents. I remember one day crying on the floor of my dad’s bathroom, begging him for weed, which was the only thing that was helping with my physical pain at the time. I then ran over to my mom’s house, which was across the street. I was paranoid that fans of the show were trying to get into the house.
On Christmas Day, I made my friends stay overnight with me because I felt like I had bugs in my body. The next day, my dad told me he thought I needed to be hospitalized. I smashed a mirror and threw whatever I could at him. I got drunk that night, and when I woke up the following day at my mom’s house, my dad was waiting for me. I was angry. I kept saying I was sick and that I had bugs inside of me, but no one understood.
I actually took a silver tray off the kitchen table, pooped on it, and handed it to him because I wanted it to be tested for parasites. I also smashed a ton of plates in the kitchen. I was going through a Bob Marley obsession at the time, and I really wanted to go to Jamaica. My dad said he’d take me to the airport, so I packed. But he ended up bringing me to the hospital.
I was mad at him for the first two weeks when I didn’t know where I was, or why I was there. But I totally understand why he did what he did. If I were in my father’s position—and my daughter was behaving like I did—I’d be like, “Yeah, let’s get her into a hospital with some doctors.” I don’t blame him at all. I’m really grateful to him, and I expressed that while I was in the hospital. Plus, if it weren’t for him, I wouldn’t have met Dr Ellyn Shander, who became like a mentor to me over the years.
Ally with her dad, Tommy
Long Road to Recovery
While I was in the hospital, Shander realised I had Lyme disease. I then met with a specialist and was put on a very serious course of antibiotics and anti-malarial drugs. That started a flare-up of symptoms, which is called a herxes. That was really rough. I went through this process with different doctors—probably 14 times if I had to guess. I would be on antibiotics for six to nine months at a time. I’d be really sick for the first month or two—I wouldn’t even be able to get out of bed. I felt pain all over. It’s like you’ve been drugged, or have the flu and aren’t able to move your body. I had headaches and nausea, too. And then I’d feel better, so I’d start working again. And then I’d get sick again. It was a vicious cycle.
I decided to try homeopathy next. I cleaned up my diet and tried to stay as stress-free as possible, which wasn’t easy because I had started my own clothing line. It’s hard to keep balanced when you like to work. So after a while, I had to make a big decision: I ended up giving up my clothing line and moving to Los Angeles. I started a two-year homeopathy treatment that was very extreme. I meditated twice a day and was following a very strict, clean diet. I painted a lot, too.
Luckily, it worked. Is every day 1,000 percent for me now? No. I’m 65 percent of what I could be. I don’t feel nearly as sick as I used to in the past, though. Still, there are points in my life I just don’t remember. People will say, “Oh, we went on this trip.” I’ll say, “We did?” But I’m not a sick person. I’m a healthy, functioning person who is managing residual symptoms from having Lyme disease for a really long time.
I had a baby girl, Harley, a year ago, and it was a healthy pregnancy. My body was clear from Lyme, as far as doctors could tell, meaning that it wouldn’t be passed down to the child.
Steve, my boyfriend and Harley’s father, is unbelievable in every single way. My Lyme disease actually brought us closer. He was by my side every day. He was—and still is—my cheerleader. He’s always encouraging me. We’re both very communicative, and we have a lot of love for each other.
Depsite that, I know it’s frustrating for the family members, the spouses, to see a partner be so ill. It’s like, “Wait: Why aren’t you getting better? You look fine.” Well, Lyme disease isn’t black and white. Some days you feel OK, and then for five days you don’t.
Ally with her daughter, Harley.
So how do I cope these days? I have a little toolbox. It has friends’ phone numbers, doctors’ phone numbers, different meditations, different oils, different bath remedies, different scrubs, different shakes, different juices. You name it, the toolbox has it, and my goodness does it work when I remember to use it.
Getting the Word Out
I know that I’m really fortunate: I fall into the stereotype of those privileged white people who get infected on the East Coast. The people who are more likely to be infected with Lyme disease are the migrant workers who spend most of their time outdoors. That being said, Lyme disease is in 50 states and 80 countries. It doesn’t care what kind of shoes you wear. It doesn’t care what culture or religion you are. It doesn’t care what colour skin you have. That’s why I’m telling my story—I’m able to get out there and speak and fight for people who can’t afford treatment, who don’t have the right testing, who don’t have the right doctors.
One of the reasons I wanted to write my memoir, Bite Me, was to raise awareness. It was strange going back and reliving moments from my past—many of which I didn’t have any memories of—while I worked on the book. I had to go through old journals, and ask family and friends to fill me in on some of the things that had happened over the years.
I’m a mother now, and I’ve matured a lot. I’m in a very stable place, so I can look back and say, “Oh my god, I need to have compassion for myself in certain stages of my life.” I’m very close with my mom now. She’ll say, “Oh, honey, I’m so sorry. You were in so much pain.” But I know she did everything she could do back then—doctors were telling her there was nothing wrong with me.
Words for Other Women
It’s incredible how many people write to me about their Lyme disease. It’s so sad to see another mom who’s so sick she can’t get out of bed to play a game with her kid. My symptoms were only a few of the ones that exist—people get Bell’s palsy (a form of paralysis), they go blind, and they have such intense noise sensitivity they can’t even hear a Lego drop. When these women tell me their stories, it makes me want to fight for them. It gives me more motivation.
In April, I went to Washington D.C. to fight to pass a bill for prevention, education, and research. It went really well. We got a few extra senators to sign onto the bill—now we have to get everyone else to sign. So I urge you to write to your senator. We need this.
I always say, when you have Lyme disaease, you move from being a victim to a warrior to a self-healer to a survivor. I moved through all those stages. I’m still a warrior and a survivor, but I’m no longer a victim. Even if I feel crappy some days, I’m not a victim. I’m still going to fight—and sometimes fighting means taking a nap.
I’m really, really hopeful about the future. I think there’s a lot of great research going on right now. So I’d like to tell other women with Lyme disease: Positive thinking is huge. I stopped calling it “my Lyme disease” and started saying “the Lyme disease I’m battling.” Language is so important, I can’t stress that enough. And don’t give up on yourself—you have something really great to offer.
A study in the Journal of Psychiatry found that one-third of psychiatric patients showed signs of a Lyme infection. And according to the International Lyme and Associated Diseases Society, it’s often a mental health professional who is the first one to detect Lyme disease. Yet many women are afraid to speak up due to the taboo surrounding mental illness. That’s why Women’s Health US has launched our very own anti-stigma campaign with the National Alliance on Mental Illness (NAMI). Join our #WhoNotWhat social media initiative and change your Facebook or Twitter profile pic to get on board.
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