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Lyme Disease Awareness Month: Ally Hilfiger felt 'bugs' inside of her as she suffered illness for 12 years

At the age of 18, Ally was committed to a psych ward by her father because she was 'manic' from the illness
PUBLISHED MAY 20, 2020
Ally Hilfiger (Getty Images)
Ally Hilfiger (Getty Images)

Fashion designer Tommy Hilfiger's daughter, artist and designer Ally Hilfiger experienced an array of health issues as a child but nothing was diagnosed by doctors. In a 2016 article, Harper's Bazaar reported that at the age of 18, Ally was committed to a psych ward by her father because "she was manic, unable to form complete sentences and completely paranoid". The article further revealed that this was Ally's breaking point and although she was committed against her will at the time, she was able to find a doctor who would diagnose her. Turns out, she was suffering from Lyme disease.

She had been bitten by a tick at the age of seven and wasn't diagnosed until she was 19, a crazy 12 years since she was bitten. At the age of 31, Ally explained her over a decade of struggle with the illness in a book titled 'Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me'. This was released on May 10, 2016.

"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," Ally told the publication about her being committed at the age of 18 as her book opens up with her waking up in a psych ward. The artist revealed that she suffered intense bouts of nausea, felt overwhelmed and would speak "outlandishly", referring to it as " just kind of this psychosis". Ally said, "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."

While Ally's mother can only recall her daughter being bitten by a tick once at the age of 7, Ally mentioned she could have been bitten a few more times. Her symptoms started off "mild" from the ages of seven to nine, and would include "joint pain and sore throats and little headaches here and there", revealed Ally. She explained to the publication that at the age of 13, she had a snowboarding accident that may have "woken the sleeping Lyme disease", resulting in a systematic flare-up.

"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 19 years old, like 19, 20 years old, so it really took them a while to figure it out," said Ally. Ally had also told Health in 2016 that she was misdiagnosed for a while with fibromyalgia, chronic fatigue, anxiety and rheumatoid arthritis.

Ally is part of the Global Lyme Alliance as an advocate of Lyme disease and says that she hopes to help people who are suffering due to Lyme disease or are being misdiagnosed across the world. She told Harper's Bazaar, "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." Her road to recovery has been well documented in her book where she speaks of a "mental, spiritual tool box" which she told Health that "it could be phone numbers of supportive friends. It can be meditation groups. It can be different types of meditation, essential oils."

In 2018, Ally also wrote on Thrive Global about healing: "There can always be a written healing plan worked out between a patient and her doctor, but that's only one part of recovery. Without the support from our friends and family, and some faith, we cannot navigate our way to full health."

May is National Lyme Disease Awareness Month, and it brings an opportunity for Lyme patients, activists and educators to share tips and open up about Lyme and tick-borne diseases. In this column, we highlight the struggles of celebrities and talk about preventive and cure measures.

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