She's a woman. Now she's fighting the prison system to make them recognize her.

When Jessica Hicklin was 21 years old, she made a promise to herself: she wouldn’t spend more than half her life “living as the person she wasn’t.”

She was five years into her lifetime prison sentence then. Some 15 years later, around her 36th birthday, she reached her breaking point.

“I filed and had my name legally changed–and that was my declaration to the world that, look, this is who I am and this is who I’ll be,” she said. That was 16 months ago, marking Hicklin’s coming out as a transgender woman, and the beginning of her battle with the Missouri Department of Corrections to get the medical treatment her doctors have prescribed.

After being diagnosed with gender dysphoria, Hicklin’s doctors recommended that she be given feminizing hormone treatments, along with access to gender-appropriate canteen items (such as gender-appropriate clothing and toiletries) and access to permanent hair removal services.

But the Missouri Department of Corrections, which operates the Potosi Correctional Center in Mineral Point where she’s being held, denied her request because it has what’s known as a “freeze frame” policy: the department of corrections won’t start treatments for trans people they weren’t on before incarceration, effectively “freezing” them in place.

That means trans people who are diagnosed with gender dysphoria after they enter the prison system are denied hormones and other treatments, their identities essentially negated in the eyes of the prison system that controls every aspect of their lives. Hicklin was incarcerated when she was 16 years old, convicted of first-degree murder and armed criminal action for fatally shooting a man during a drug-related incident in 1995.

“The shortest way of saying this is, it really is life and death. Because the struggle at that point is, do I go on living this life that’s not mine? The one emotional way to describe it is absolute despair,” she told me last week, calling me from a metal pay phone in the middle of her 100-person ward in the prison.

With the legal support of Lambda Legal, she filed a lawsuit against the Missouri DOC and Corizon, the private healthcare company contracted to provide medical care at the Potosi facility, on August 22, after several internal appeals for hormone treatment, hair removal, and gender-appropriate canteen access were denied:

The suit alleges that the correctional department is violating Hicklin’s constitutional rights to equal treatment and protection from cruel and unusual punishment.

Because the struggle at that point is, do I go on living this life that’s not mine? — Jessica Hicklin

The Missouri Department of Corrections declined to “comment on matters under litigation” when asked about this specific case and their broader policies on trans inmates’ medical care. A spokesperson for Corizon said they could not comment on this case or the company’s policies, citing patient privacy and ongoing litigation.

Hicklin’s case comes at a moment when the federal and state governments are beginning to recognize the barriers to accessing health care that transgender people face regularly. Even outside correctional institutions, trans people struggle to get access to medical services, often facing discrimination from health care providers and insurance companies. That’s despite an update to the Affordable Care Act’s anti-discrimination clause, finalized in July this year, which prohibits insurance companies and doctors from denying healthcare to anyone based on their gender identity.

Medical guidelines set by the world’s top transgender healthcare body (the World Professional Association for Transgender Health, or WPATH) confirm that hormone treatments are part of the Standards of Care for people with gender dysphoria, and that hair removal and gender-appropriate grooming can be an important part of treatment as well for some people. Those guidelines are recognized by the National Commission on Correctional Healthcare and the U.S. Department of Justice’s National Institute of Corrections.

Particularly with hormone therapy, the Standards of Care tell us that the consequences of denying someone treatment can be dire: “lack of initiation of hormone therapy when medically necessary include a high likelihood of negative outcomes such as surgical self-treatment by autocastration, depressed mood, dysphoria, and/or suicidality.”

Hicklin’s psychologists and counselors have diagnosed her with depression, anxiety, and she says she’s had thoughts of self-harm, including auto-castration.

“You wouldn’t accept this in any other context. Regardless of what someone is convicted of, you would never say, ‘Well if you weren’t getting treatment for cancer or diabetes before you came into the prison we’re not going to give it to you now. It’s absolutely ridiculous,” said Hicklin’s lawyer, Demoya Gordon of Lambda. “It’s cruel, it’s unusual, it’s arbitrary, and it’s entirely unreasonable and flies in the face of medical standards and just human decency and human rights.”

For Hicklin it’s a day-to-day struggle. She feels at odds with her own body. “I get up every morning and I see a person who’s not me. There’s facial hair, body hair, and no matter how much I shower and how much I shave and how much–I just feel dirty,” she said. “Because I just can’t get rid of it. I look at my body and go, this is really not my body. Really, I’m trapped in the prison of this person I’m not.”

For now, she grows out her long, black, wavy hair–it’s the one expression of her gender identity she’s able to have some control over, while being forced to wear men’s underwear and prison uniforms.

What Hicklin is going through is one example of a wider disregard for the rights of trans people in prison, Harper Jean Tobin, policy director for the National Center for Transgender Equality, told me.

“I think we’re at the intersection here of two groups of people who are heavily stigmatized in our society, and that is people who we’ve incarcerated and people who are transgender,” she said. “Health care for transgender people is especially misunderstood. There’s a widespread consensus about this in the medical profession but it’s not understood by the public.”

That denial of health care is founded on attitudes that essentially de-humanizes transgender people, Tobin said. “I think all of that says that this isn’t real health care and in a sense almost that these aren’t real people.”

Though there’s no definitive count of exactly how many trans people are incarcerated nationally, a Department of Justice report estimated that between 2011 and 2012, there may have been roughly 3,200 transgender prisoners in state and federal prisons and jails nationally, though Tobin says that’s likely an underestimation because of the way the survey question was asked and the fact that it’s based on a sample, not an exhaustive survey of all inmates.

“We’re clearly talking about thousands of people across the country, even if it’s difficult to pinpoint exactly how many,” she said.

Really, I’m trapped in the prison of this person I’m not. — Jessica Hicklin

In one high-profile case in Georgia, Ashley Diamond, a transgender woman who was serving a 12-year sentence for a probation violation, sued the state after she was denied hormone treatments—she reached a settlement with the state in February this year. While her case was underway, Georgia rescinded its “freeze frame” policy and began training staff on the needs of transgender prisoners. Part of the larger impact Diamond’s case had was the Department of Justice filing a statement of interest on her behalf, followed by a public statement that for the first time took a specific stand against denying incarcerated trans people access to trans-specific health care.

“By taking action in this case, the Justice Department is reminding departments of corrections that prison officials have the obligation to assess and treat gender dysphoria just as they would any other medical or mental health condition,” said Acting Assistant Attorney General Vanita Gupta, of the Civil Rights Division, said in a statement last April.

Last August, the Texas Department of Criminal Justice changed their policy to explicitly allow inmates diagnosed after entering the prison system access to hormone treatment. And a few months later, California announced that some transgender inmates will have access to gender reassignment surgery.

The change in these states generally stems from lawsuits like Hicklin’s–so while federal laws and guidelines are becoming more explicit in protecting the rights of trans people in prison, seeing that reflected on the ground is a slower process that relies partly on the courts.

Hicklin knows she’s not alone. She told me she’s heard from at least 14 trans people in correctional facilities in Missouri alone after the news of her lawsuit spread: “It’s heartbreaking. I’m in touch with trans women who have been fighting the Missouri Department of Corrections for 15 and 20 years. And, I’m sorry, I’m trying not to cry about this, I got a letter two weeks ago from a woman who–she’s roughly 60 now–she’s been incarcerated for 37 years. And she’s been fighting this particular battle for almost 17.”

She’s not challenging it as part of this lawsuit, but Hicklin is also being housed in a men’s prison—it’s standard in almost every prison across the nation for trans people to be housed according to their gender assigned at birth, not their gender identity, despite the Prison Rape Elimination Act requiring that decisions on where to house offenders be made on a case-by-case basis when necessary.

A U.C. Irvine study of California prisons in 2007 found that trans women in male prisons were 13 times more likely to be sexually assaulted than the general prison population. Hicklin says that in her case so far, being a trans woman in a men’s prison hasn’t put her in any more or any less physical danger than other prisoners, but being surrounded almost entirely by men every day has meant that she’s faced some discrimination.

“I live around all men all day who are not around people of the other gender except for staff, so there is a little misogyny that is sometimes hard to deal with,” she told me. “But generally it’s OK.”

She knows some people are less than sympathetic to a convicted murderer’s health care needs, but asks that they display more empathy than she did when she committed her crimes.

“The one thing that you can say I’m here for is lacking compassion and empathy in regards to the things I did to other people. Don’t be that way. Don’t look at somebody and say, ‘I don’t care that you’re suffering,'” she said. “In the last 20 years I’ve tried to everything I can to fix that about myself, but there was that time.”

She’s also seeking relief from her life without parole sentence in light of two recent Supreme Court cases that found it unconstitutional for minors to automatically be handed life sentences without parole, because their cognitive faculties are still developing. And a Missouri state bill passed last month could also make her eligible for parole within four years: the new law allows inmates sentenced to life without parole to appeal their sentence after they’ve served at least 25 years of their sentence.

Meanwhile, Hicklin meditates 15–20 minutes every day in her roughly 15-by-7-foot cell (at some point early in her prison term, she converted to Tibetan Buddhism), trains puppies in the prison’s rescue dog program, and works six days a week as a systems engineer in the facility’s closed-circuit television station. Her cellmate, who’s on death row, is quick to defend her from any abuse she might have leveled at her by other inmates, she said.

“It’s not easy being the only person who lives with a trans woman in the wing. So he got a lot of flack out of it but at the end of the day he’s a stand-up person who’s really great,” she said. “‘You don’t understand what she goes through.’ That’s usually what he says. I’m blessed.”

With the rest of her time, Hicklin reads computer science manuals and philosophy books (she was studying to be an actuarial scientist before she was convicted). She says the daily meditation is the main thing that keeps her alive when she get anxious, depressed, or thinks about self-harm.

‘You don’t understand what she goes through.’ That’s usually what he says. I’m blessed. — Jessica Hicklin

“If I had to spend my entire life trying to be a good person, making up for my past, and actually did something good, if I laid down at the end of my life and looked back and said, ‘I did it but I didn’t do it as Jessica’–I would feel like my life was incomplete. I’ve had that thought for quite a long time now,” she told me. “It’s part of why this distresses me so much now, because I’m reaching that point where no matter how long I live it’s not going to be long enough. The majority of my life won’t be as myself.”