Ally Hilfiger On How Being Institutionalized By Her Father Saved Her Life

From Harper's BAZAAR

At just 18 years old, Ally Hilfiger woke up terrified, alone and confused in a psych ward. Her father [fashion designer Tommy Hilfiger] had her committed after the teen seemed to spiral out of control: she was manic, unable to form complete sentences and completely paranoid, all while dealing with a number of health issues nobody could seem to diagnose.

Since she was a kid, Ally had endured mysterious health issues and symptoms that were unable to be correctly diagnosed. Finally she hit a breaking point. After becoming increasingly paranoid, nauseous, exhausted and what she recounts as "completely crazy," the decision to institutionalize Ally, though against her consent at the time, ended up saving her life. It was at that psych ward where she found the doctor who led her to the diagnosis she'd been searching for: she had Lyme disease.

Hilfiger had been bitten by a tick when she was just 7 years old, an astounding 12 years before she was correctly diagnosed with Lyme disease. Now, at 31, she's sharing her terrifying story and struggle in a new book entitled Bite Me in hopes of raising awareness about the often misunderstood disease. Here, she talks to BAZAAR about how Lyme disease affected her mentally, how she's coping with the illness now and her plan to make a real change for those suffering with the disease.

Harper's BAZAAR: What inspired you to write this book now and finally share your story?

Ally Hilfiger: You know, when I got pregnant I realized my whole experience through this disease had a beginning, a middle and an end. Now, having my daughter, I'm at a place in my early thirties where I'm much more grounded, so I can have a healthy perspective on my story and really understand what happened and how I can live with this illness now. Not only that but I was kind of like, enough is enough. Lyme disease is so misunderstood. This whole thing…there are so many controversies around it. I know so many people are going through this, why don't I just write about my story? I wanted to be really really honest and bring some awareness to this disease. There's also a lot of miseducation around Lyme disease and I thought that hopefully sharing my story might help clear up a few things and bring some awareness to the issue.

HB: The book starts with you waking up in the psych ward really confused, not knowing how you got there. As an 18-year-old, that must have been so terrifying. What was that like?

AH: Imagine waking up in your worst nightmare and being so freaked out, like you're in a Twilight Zone movie but it's your real life, and feeling completely misunderstood and trapped. In that moment, it was utterly scary, shocking, horrifying and very lonely. However, looking back at it, like I said, I've really gained a clear perspective, I'm actually really grateful that I ended up there because I got to meet Dr. [Ellyn] Shander who led me toward the right diagnosis and helped shepherd me through the whole experience. So if I hadn't been there, I wouldn't have met Ellyn and I wouldn't have started treating this disease that has gone undetected and undiagnosed and untreated for so long.

HB: What were some of the things leading up to your father putting you in that psych ward that caused him to do so?

AH: Physically, there was a lot of severe nausea. Whenever I would eat food, I felt like I hadn't eaten anything. I couldn't put sentences together, I felt completely overwhelmed and shaky, I started speaking very outlandishly, and just kind of this psychosis, honestly. It was almost this manic thing, like a mania, and that's nothing I'd ever experienced or anything my family had ever seen from me. I was a pretty balanced child and person, so this behavior was completely crazy, like I was crying out for help. I felt like there were bugs inside of me or parasites inside of me. I was paranoid all the time and, I mean–it was not me. It really was not me. I was always a very good girl, for lack of a better word, but I had gone completely crazy.

HB: I know you wrote you were initially disappointed and upset with your dad for sending you to the psych ward without your consent. How long did it take for you to forgive him for that?

AH: Probably halfway through me being in the hospital. My father did what he needed to do. I ended up understanding that I really liked the structure. I really needed to take a break from the work that I was doing and being in that hospital with the doctors, it offered me a sense of security and grounded-ness and stability and I kind of went with it. My parents were always so loving, they showered us with so much love and kindness, so I knew it was not a malicious thing. And I understood that. But I was like, "when can I leave?" and he was like, "it's okay honey, just a little longer. We'll come visit you all the time." They were wonderful and I'm sure it was one of the scariest things in the world to see their daughter, their oldest daughter who was the strong one in the family, be in this place. It was really scary for them.

HB: There was a pretty long gap between when you got bit by the tick as a kid to when you actually ended up with the diagnosis later in life. What were some of the symptoms you had growing up and how old were you when this all started?

AH: I was bitten when I seven years old, and that was the only reported bite. I could have been bit before that and a few times after that. But my mother remembers that at seven years old I was bit. So I went through symptoms at seven, eight, nine years old, and they kind of were mild, like joint pain and sore throats and little headaches here and there, but nothing kind of crazy. And then I had a snowboarding accident when I was thirteen and I dislocated my hip. That might have triggered something or woken up the sleeping Lyme disease. I don't know what happened, but my system really flared up and that was the most frustrating thing–the neurological part. I was unable to properly read like I used to, information was not absorbing into my brain, I was studying for tests and would understand something but the next day it would all be gone. Frustrating things. A lot of joint pain, a lot of nausea. The joint pain was pretty much the main complaint, and it wasn't only in that dislocated hip-it was kind of everywhere in my body. And then I got properly diagnosed at nineteen years old, like nineteen, twenty years old, so it really took them a while to figure it out.

HB: What is one thing people don't know about Lyme disease that you think they should?

AH: That you can look great-you can still look pretty good if you're sick and feel like death on the inside. One day you might be able to participate in normal life activities and then maybe for like six days after that you cannot move or get out of bed. It's very flippant–very complicated and flippant and confusing to a lot of outsiders. I think that's a struggle with a lot of Lyme patients because I might not look sick, but I might feel sick and I might be able to come to your birthday party on Friday, however, I might not be able to come meet you and your mother for lunch on Tuesday because Ican't move or get out of bed or mentally and physically function. It's so frustrating and difficult for friends and family members to really understand that.

HB: What has being diagnosed with Lyme disease taught you about life in general and your own mental wellbeing?

AH: A fighting sense of strength and perseverance lies in every human. If you have the opportunity to access it, there are a lot of different levels of acceptance that I had to grow and I still have a hard time accepting that my body cannot keep up with my brain half the time, which is really frustrating. And so I have to just live with the mentality, wow it really could be worse. I live a wonderful life, it sounds really corny, but living in gratitude helps a lot–and perspective. It showed me that I'm a much stronger person than I ever gave myself credit for, because when you're sick you feel like you're weak and you're failing and that you're not strong enough and that you can't keep up with other people but it actually did the opposite for me. It showed that I'm a pretty tough cookie and a fighter.

HB: You're also now on the Global Lyme Alliance. What do you hope to accomplish as an advocate of Lyme disease?

AH: I hope to accomplish a few things. The number one thing is finding a proper test and a way to diagnose the disease easily, accurately and affordably. Number two is education and awareness, and number three is prevention–to let people know when you're going outdoors, Lyme disease is in 50 of our states and 80 of our countries. You can get it hiking at Runyon Canyon or in Santa Barbara as easily being in Martha's Vineyard. You've got to spray yourself down.

HB: Since you've been diagnosed you made the move from New York to LA. What has that lifestyle change done for you in coping?

AH: I think honestly the weather and not having the seasonal changes is a big thing for me, having the sun. People with Lyme disease have a low level of Vitamin D, so being in the sun really helps (Of course, with SPF). And then the seasonal changes, like the mold in the air in the fall, and the allergens in the air in the spring really activate Lyme disease in some people and a lot of people I've spoken to. A lot of people don't notice it but a lot of Lyme patients do. It affects the joints and the brain. Also the lifestyle here. It's still a city and it's still active, but it's nowhere near as grueling and hectic and grinding as New York City was. I was like, "this city is killing me." I really wish I could move back there one day, but right now it's just not healthy for me.

HB: Do you have any plans to get back into the fashion world? What's the next step in your career after this?

AH: You know, that's a good question. I will forever and ever be a creative person, and constantly creating things–I will never take having a clothing line or designing clothing off the table. It will always be there, as well as painting and making art. After the book, it's going to be interesting to see. Maybe a product line is down the road. I'm a mother now so my perspective on things is a little bit different, and my focus is definitely on my daughter. But yes, I will probably design again one day.

Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me by Ally Hilfiger is available now for $18.75 at amazon.com.