'RuPaul's Drag Race' Star Willow Pill Details Life with Cystinosis: 'Nothing Is Unaffected By It'

Willow Pill opens up to PEOPLE about her lifelong battle with the rare genetic disorder cystinosis, and how she filmed RuPaul's Drag Race while battling a slew of paralyzing symptoms

Willow Pill
Photo: Getty

Willow Pill has been a standout on season 14 of RuPaul's Drag Race, her uniquely creative looks, hilarious wit and oddball charm earning her a spot in the Emmy-winning reality show's grand finale.

But behind the 27-year-old's powerhouse performance has been a personal pain.

Since birth, Willow, who lives in Denver, Colorado, has been battling cystinosis, a rare genetic disorder that effects just about every system in the body, starting with the kidneys. (Her sister, Elizabeth, died from cystinosis complications months after Willow finished filming Drag Race last summer).

"It's a frickin' ravenous and thorough disease," Willow tells PEOPLE. "My kidneys went into failure when I was 14, and within a year I was on dialysis and received a transplant from my brother. But then cystinosis starts to infiltrate other organs as you get older."

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In Willow's case, the symptoms have been extensive. "My throat has been affected heavily with what's called dysphasia, which means I have difficulty talking, swallowing, drinking and eating. My eyes get infiltrated with cystine, which causes blurred vision and pain. Cystinosis can cause muscle wasting, so my muscles have started to deteriorate over the last four or five years; they're not as big and strong as they used to be, and I have extremities of the hands and the feet. It affects my brain. And then beyond all that, anemia is another side effect, so I experience just constant exhaustion."

"Really nothing is unaffected by it," she adds.

The lysosomal storage disease is caused by an abnormal buildup of cystine, one of the body's essential amino acids. There's no cure but prompt treatment can slow the development and progression of symptoms.

"I take a lot of medications — a little over 20 pills a day," Willow says. "And while they're supposed to make you feel better, taking that many pills every day growing up, they make you feel sick. It's for the greater good, so that your body functions long term, but you feel ill through your daily life. It's not fun, really."

Willow had to manage both her symptoms and the side effects of the medications while filming one of the most grueling competition shows on reality TV, every day for nearly two months straight.

"It was a pretty long experience. It wasn't easy," Willow says. "But when you are someone who's been dealing with chronic illness or a disability, you find your way to make it through the world and through daily life. It becomes kind of secondhand."

Sadly, "secondhand" also means those experiencing chronic pain don't speak out about what they're going through — something Willow hoped she would be able to bring attention to with her appearance on Drag Race.

"It's unfortunate that people with disabilities and illness stay a little bit silent in their daily lives with what's going on," she explains. "It's important to know that if you are disabled or chronically ill, it's your right to talk about those things."

"I wanted to go into the show being really honest about what was happening in my life because I hate that sometimes we make a sugar-coated experience or an inspirational story out of sick people's lives when often, there's just pain there that needs to be felt and heard first and foremost," Willow continues. "Our communities need to take care of those who are most vulnerable because it's an impossible situation to be in. And one of the most gratifying parts of the experience of Drag Race has been hearing from people who tell me how important my time on the show has meant to them. That's kind of priceless."

Since filming Drag Race, Willow came out as trans femme, revealing in an Instagram post in March that she came to terms with her gender identity within the last year.

Aside from plastic surgery to make her face more feminine and reduce some of the facial effects long-term medication, Willow has not started any hormone therapy.

"A lot of people with illnesses and disabilities are not able to take hormones, even if they want to," Willow explains. "Estrogen, particularly, can cause a lot of increase of side effects of the medications you're currently on and I'm already on a lot. So if I do choose to begin estrogen, that's something I'll have to take very, very slowly. I'll be meeting with my doctor next week about what the right choices are for me going forward."

There's also another factor Willow needs to take into consideration: post-traumatic stress.

"PTSD can take place in many forms. We most often hear about it with soldiers, postwar, but PTSD can be very, very real in medical patients and it's very difficult," she says. "When you grow up from infant ages to your teens being in and out of the hospital, in and out of surgery — being poked, being prodded and having your body made into a medical object — that causes pain and trauma that ends up developing oftentimes into PTSD."

"For me, it's been a lot of anxiety, a lot of nightmares," Willow adds. "It's a very, very real and difficult thing to go through, and I'm honestly still in the process of kind of working through a lot of trauma that's happened to my body through medicalization. So because my body's already been so medicalized, I don't love the idea of furthering that medicalization of my body. It's something I'm still really deciding."

Willow — who recently moved to Chicago — will find out on Friday's Drag Race season finale if she wins the title of America's Next Drag Superstar (as well as that $150,000 check).

Regardless of what happens, she tells PEOPLE she's proud of her time on the show.

"I had really such a blast on the show," she says. "I think I've learned very well, through life with cystinosis, how to have fun and how to enjoy the moment. That's a lesson that I have been fortunate enough (and unfortunate enough) to kind of learn at an early age. I didn't want to live this experience and then watch it back and be like, 'What was I doing? What was I thinking?' I wanted to live the experience, first and foremost, and feel happy with what I had done. And I can honestly say I feel incredibly proud and happy with what happened."

The RuPaul's Drag Race season 14 finale airs Friday (at 8 p.m. ET/PT) on VH1.

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