Out of the Dark: Joseph's Story

Out of the Dark: Joseph's Story

By Nonjabulo Mlangeni

In the latest blog on our website, we profile Joseph Thiessen, an administrator at a nonprofit. In this honest and vulnerable story, Joseph walks us through his early struggles with self-image and shame, and the decades-long process to find his voice. A powerful story for men who have struggled to assert themselves, and are learning it's okay to make waves.

Joseph Thiessen's story is about coming into the light. He's spent much of his life afraid to be seen. As a child, he was extremely shy, so much so that he couldn't express his needs. At school, he remembers struggling in some areas, but being afraid to ask for help.

"I enjoyed listening to a topic like history or science," he says. "But when test time came, I held on to very little information. It just wasn't there for me, and that was really perplexing. But I'd never speak up. [For me to get help,] it would've taken a teacher saying, 'oh, he has trouble, maybe he needs it.'"

But even if he'd found the courage to ask, it may not have made much difference. Joseph later learned that his school was one of the lowest ranked in the state and probably lacked the resources to do more than the bare minimum.

Outside the classroom, there were personal struggles—and at an age where there truly shouldn't be. In the third grade, he found pornography that a sibling had hidden in the house. This was a formative event that opened the door to decades of emotional turmoil.

"It really warped my vision of what sexuality was," he remembers. "It also warped my perspective on my own body. I was beginning to notice the men in the videos and thinking, 'one day I'll look like that.' But then one day came, and I didn't. When you go through puberty as a boy with XXY, your testes atrophy [instead]."

The porn industry has long been criticized for creating unrealistic expectations on both sides. But Joseph wasn't old enough to know that he was comparing himself to manufactured ideas of masculinity and sexuality. It was an impossible standard, and yet he was sure he fell short.

There were other experiences that told him he was lacking. Growing up on a farm with his family, he struggled with certain tasks, though he didn't know why.

"My brother would tease me sometimes, because I couldn't tighten or loosen bolts on the farm equipment. I had to use other methods to do that. That weakness came from low testosterone, which I didn't know was affecting me at the time."

In other instances, it was his struggle to retain information. He remembers one time when he was helping his dad sort cattle and made a mistake that seemed to ruin everything.

"I was supposed to swing the gate left or right, depending on what he called out. One time, I confused the left and the right. I went the wrong direction, and it completely derailed what he was trying to do. We had to start over, and he was like, 'how hard is it to remember left and right?' And [to me] that situation was just more evidence that something was wrong with me."

Life through the Glass

Collectively, those experiences made Joseph become socially detached, though not enough to raise alarms. Just enough to get through young adulthood with no meaningful connections. Though he'd known many of his classmates since kindergarten, none of those relationships had depth. He was friendly with all but close to none.

Other men with XXY have spoken about this sense of being on the outside looking in. In Joseph's case, he seemed to stand at a distance, as if watching life through a window. And it wasn't that he was bullied or ostracized by other kids, it was his own belief that he wasn't enough.

"I really turned inward and turned negative," he says. "I spent the first 30 years of my life just thinking I was stupid. Because that's the message that you get—sometimes directly, sometimes indirectly. It takes getting into your 20s and 30s before you realize it's not okay to think of yourself that way."

A Time to Shine

But in that wilderness, there was also grace. In one instance, a thoughtful adult nudged Joseph into the spotlight he so deserved. Though he was a gifted singer, with some medals to his name, he often performed as one of many voices.

Then, a teacher gave him the lead role in a musical. The responsibility stretched him and forced him to grow. "She probably saw I was troubled in some way, and thought, let's put him in this," he reflects.

"It showed me that I had something valuable to offer. I'm busy saying I hate myself, and there's so much wrong, then here's this one thing that's good ... That thing becomes a foundation that helps you discover other good things and find out you're on more solid ground than you realized."

Your Life Is Speaking

In talking to men with XXY, I've heard how people around them opened their eyes to different life options. Sometimes a career path they'd never thought of, sometimes a talent they'd never considered. This external information illuminates parts of themselves that they didn't see.

Joseph had these experiences in college. Teachers who affirmed his talents for writing and art. Although he was touched by their encouragement, it wasn't enough to make him do something with his gifts. Looking back, he sees that he just "couldn't accept that kind of importance."

He also admits that he showed some resistance to feedback. But, as graduation drew near, he had to make an exception, since he had no idea which path to take. He took aptitude tests to see what he might be good at, but the results seemed ridiculous.

"I balked at them," he says. "It said I'd be a good administrator. Some kind of desk job in an office, which sounded so boring. I couldn't wrap my mind around that being something I wanted to do."

A month after Joseph graduated with a business degree, things came full circle. As a student, he'd received support for porn addiction through a faith-based nonprofit. Without much else to do, he decided to volunteer for them. Instead, he got a job—in the exact role the test had pointed him to.

"I walked in looking to volunteer, and they said, 'that's fine, but would you be interested in this?' They'd just written a job description for an office administrator."

They asked if Joseph had done any of the things on the list. For many, the answer was no, but he knew that he could with training. For their part, something told them that he'd be a good fit. Still, it seemed like such a humble start.

"I thought: it's a nonprofit and there won't be much pay, plus I have college debt. But I didn't know what else to do and it seemed like the best choice at the time. Now, almost 30 years later, I'm still doing it. I'm actually shocked by how much I love my job, and it's all the things the test told me I'd excel at, plus more."

You Can Adapt

Thanks to technology, Joseph has help for areas where he's less efficient. This is an important point for men with XXY, who may think their challenges disqualify them for certain roles. Don't be too quick to count yourself out.

"These days, there's technology that helps with things we don't do well," says Joseph. "Like calendar or notetaking apps for things we don't remember."

To do his job well, and to simplify his life, he's learned to adapt. In some cases, it wasn't even hard. Just a matter of creating helpful habits and making intentional adjustments.

"I went from paper journals to digital, because I can just type in a word or a phrase that I think I wrote earlier, and the app will find that page for me. So, those are the ways I've learned to cope with things that have been a problem."

Diagnosed at 40

About a decade into his career, Joseph was looking to set up healthcare through a new insurer. He thought that having a teaching doctor could be a positive experience, so he opted for a university hospital.

Incredibly, they assigned him a doctor who had experience diagnosing XXY. After a routine checkup and physical exam, the doctor asked a question, then left the room and returned with a stack of papers.

"He said, 'I think you have Klinefelter Syndrome. We won't know for sure until you have a genetic test—plus a couple of other tests before that one. But go home and read this.'"

The news sent Joseph into a tailspin. He'd just reached the point where he'd developed a fragile confidence. It was still at a vulnerable stage, so frail and unsteady that a gust of wind could knock it down. The diagnosis crushed it flat.

"Prior to that meeting, I was just finding my footing in terms of how I saw myself ... gaining mastery over certain areas of my life, like my thinking, my self-image, my importance at work. And then this thing caused me to capsize and go into a very long depression."

Into the Dark

There were multiple things that bothered Joseph. First, the lack of clarity. The diagnosis answered some questions about his life experiences, but not all. Some dots were harder to connect.

"I was so angry. I'd wanted all the answers to come easily, just huge light bulbs going off. And yet they weren't. Some things were making sense, like my brother teasing me for my strength. That's low testosterone. But the learning thing, I didn't know if I could pin that on XXY."

Since this was over a decade ago, many of today's resources just didn't exist. Genetic websites were often written with specialists or researchers in mind. The academic language wasn't accessible to Joseph, and he felt overwhelmed.

"It was just hard for me to grasp [what was happening], and I nosedived back into the addiction I'd started in third grade."

The shame of both the addiction and the XXY made him withdraw. So much so that his coworkers started to notice, though they didn't know he was deeply depressed.

Instead of releasing that burden, as we're designed to do, he pushed it further inside of him. It sat in the pit of his stomach like a stone. Like a bad meal trying to come back up through a mouth that won't let it. Joseph kept swallowing the shame, though it only made him feel worse.

Starting A Fire

"[Before the diagnosis,] I'd always said I hate myself in general. But after, it was 'I actually hate my body now. I hate my genitals.' And I asked my counselor, 'how many people can I talk to about this?' And he said, 'not many.' That angered me, but it also lit a fire in me. I was like, 'I'm gonna prove him wrong.'"

And so the shame came down brick by brick, not fast like the walls of Jericho. He started small, telling his closest friends about the XXY. They were gracious and let him speak freely. The self-hating phrases that he'd once said in dark rooms, he now shared in the open air.

His friends listened and tried to understand. Then, one day, Joseph had said them so many times that there was nothing left. Like a well of venom that finally ran dry.

"I had these experiences with people who'd just receive it as I said it over and over, till I didn't need to say it anymore."

A New Perspective

Like any good healing work, Joseph's recovery has happened over time. Through layers of progress and moments of revelation. Some years after the XXY diagnosis, he was at a conference on genetic anomalies. He'd felt led to attend, but was disappointed to find that many of the discussions were over his head.

Still, one presentation stuck out, though not for the best reasons. The speaker was discussing the many programs that Germany provides for kids with special needs. Joseph was struck with envy. They seemed to have an abundance of resources and help. Where was that when he was a kid in need?

"I was like, 'I wish I'd had that,' and I honestly felt God speak to me in that moment and say, 'you do have this.'"

"I have provided this your whole life and made ways for you where you haven't seen it. You have a good family. You were in youth groups where you thrived. Nobody hated on you, nobody bashed you. You were protected and you had fun."

"And he was right," Joseph says. "Even though school was difficult, nobody bullied me. Even the work I do today, it's for a support group ministry. So just being there gives me access to help, feedback, and growth. God was like, you already have this. You don't need a program in Germany that's tailored for teenagers."

Joseph came out of that experience with a new perspective, and a new appreciation for the privileges he'd always had. Small mercies and victories that eased life's burdens along the way. Little did he know, there was more to come.

An Invisible Hand

More recently, Joseph's been diagnosed with a second genetic condition. This one is so rare that the cost of care is astounding. "When I tell this story, I usually ask if the person's sitting down," he says, building up to a tantalizing tale.

"One month's supply of this medication is $247,000. That's one month. And my insurance covered it all ... I also signed up for financial help from the pharmaceutical [company], and they granted it. So even with my co-pay, they paid that. I've paid nothing. In fact, they said, 'the disorder is so rare, you qualify for additional help.' So I just got 6 months of premiums reimbursed to me."

It's the kind of story that gives you chills, but that's my own perspective. I wonder how Joseph sees it. How would he summarize all these highs and lows over all these years, and tie it all together? After all, I'm not the only writer on the call.

"There are some days when things aren't going well for me, but my journey and my story is one where there's been help all around me ... To me, that gets tucked into how God provides, and not necessarily through money. The signature of my story is that there's an invisible God, propping me up and helping me, every step of the way."