I Stopped Hiding My Disability, and It Opened Up New Worlds

Everyone has a secret side, but accepting that side of yourself can make all the difference in the world.

The manner I was born was a little different from how most babies are born. I was taken into another room by the physicians as soon as I emerged, and they broke the terrible news to my parents—I was born without a left hand. It must have been really startling for them. There was a whole hand that was just absent?

Even though it seemed shocking at the time, 1 in 1,500 babies born in the US each year have a “limb difference,” according to the Centers for Disease Control and Prevention. Having extra toes or fingers is the most prevalent variance in limb length. Amniotic band syndrome, which is my variant, is even more uncommon; it affects only one in 10,000 to 15,000 newborns. Whatever the shape of the impairment, these families must quickly learn all the nuances of managing it, from arranging accessible transportation to instilling confidence in their children.

In fact, the disclosure of my limb difference would come to define the remainder of my life, and if it hadn’t been for what transpired next, it may have been disastrous. According to what I’ve been told, a nurse wrapped me up, carried me back into the room, put me in my mother’s arms, and told me to “take her home.” You’ll adore her. She will be raised by you just like any other child. You’ll handle her normally.

This is precisely what took place.

A typical upbringing… sort of

That advice was taken seriously by my parents, and generally speaking, it worked well. I excelled academically, engaged in student government, played sports, did theater, and went on playdates with friends. Even though I did receive some looks and “polite” inquiries regarding my condition, I consider myself fortunate that my limb difference was not ridiculed.

I rapidly figured out how to adjust, getting past the “missing” hand, just like kids do. My father trying to teach me how to tie my shoes is one of my first recollections. His two-handed approach didn’t work for me, so I gently nudged him aside until I found a way to do it with just one hand.

But not all of the challenges were that easy. My parents’ intense attempts to make me feel “normal” also meant that I didn’t really have a place to discuss my limb difference, even if it was unique. I had one hand while other kids had two, no matter how we tried to spin it.

Why I began to conceal my illness

On my first day of high school, the realization that I was unique really sank home to me. I was thirteen, a young age when the drive to fit in is heightened and children are already quite self-conscious. I recall a child staring at my left arm for a bit too long when we boarded the yellow school bus. I was very uncomfortable with the way people were staring at me, and I instinctively placed my hand into my pocket to cover it.

I told myself that one day, as I was attempting to make acquaintances, I would just hide it. However, a single day of concealment became a week, then a month, then years—25 years, to be exact.

For the following twenty years, I never revealed that I had a limb discrepancy. I would put it under jackets or under bags, or cover it with extra-long sleeves. I would also keep it in my pocket. However, the problem with hiding is that it suggests that something negative or incorrect exists (otherwise, why would you need to hide it?). I had made the mental decision that I was ugly because of my missing hand, and that if people found out, they would be afraid of me and wouldn’t want to be around me any more. This self-loathing became absorbed in me, and it grew worse with time. To be honest, I was afraid that if I showed off my limb difference, other people would think I was just as hideous as I thought I was. I was constantly afraid and lonely.

Dating someone who is missing a limb

It felt hard enough to make friends, but finding love felt especially impossible. I made a conscious attempt to hide my limb difference when I started dating. We would eventually get to a place in our relationship where I felt compelled to tell them. I would torment myself over the “big reveal” and imagine it for days, both for them and for myself. “There’s something I really need to tell you,” I would say, leaving them to wonder what horrible secret I was keeping. Once I had braced myself, I would pick up the phone and tell them, “I was born missing my left hand,” without waiting for a response. Even when they did, to their credit, I couldn’t stand to talk about it, so I’d leave it on the answering machine and listen to their message later, waiting in shame and fear for them to call me back.

My friends, coworkers, and boyfriend all handled it well and offered encouraging words like “It’s not a big deal” or “You shouldn’t hide it.” But I didn’t care about what they said. The narrative I was telling myself about how horrible I was and how I wasn’t deserving of love were the only words that truly mattered. Since hiding is often associated with lying, it can be difficult to establish lasting relationships with those you believe you are lying to. Furthermore, it gets more difficult to stop hiding the more you hide.

Why I no longer kept my disability a secret

It’s interesting to note that I was persuaded to cease disguising my limb difference during that occasion.

I met someone wonderful when I was 38 years old, tired of hiding, and very lonely. I allowed them in. It was precisely what I needed—a combination of my feeling at last prepared to come out of hiding and his readiness to walk me through the process. I let someone truly hold my leg, examine it, take photos of it, touch it, and truly love it—love me—for the first time in my life.

After ten years, the relationship ended, but I carried the compassion and self-love I had gained from it. After that, I realized that having a different limb from myself was a wonderful and distinctive quality that should be displayed rather than kept hidden.

How everything in my life improved after I revealed my arm

It was a life-changing event, and in the process, I discovered how to love myself. Being able to love who I was made me happier and altered the course of my entire life.

Physical care was the first step: I’d been getting frostbite on my left hand every winter for years because I’d stuffed it so far down my pocket that I didn’t realize it was freezing. Learning to care for it, even in small ways like keeping it warm and shielding it from the weather, was necessary before it could be revealed.

My relationships also got better. I discovered that when I was at ease with who I was, so was everyone else. By sharing my troubles with them, I gave them permission to share theirs as well, and I was able to connect more deeply with a far wider range of people. I had overcome my loneliness.

I’ve at last discovered my tribe. I began to see other persons with limb differences since I wasn’t as preoccupied with hiding who I was. We’re not in the minority! One of these new acquaintances introduced me to the Lucky Fin Project, a group that supports individuals with limb differences of all kinds. In order to further advocate for my community and assist raise awareness, I finally joined the board of the organization.

My destiny in life also became evident.

I had spent 25 years working with young people in nonprofit organizations, but after coming to terms with my disability, I became passionate about using my writing and public speaking to inform others about disabilities as a part of diversity. My goal now that I have changed my professional direction is to raise awareness of disabilities and collaborate with businesses to enable their workforce to flourish and come out of hiding.

My book, Singlehandedly: Learning to Unhide and Embrace Connection, was also written last year. It centers on my experience of hiding and coming out of hiding, as well as the necessity of include people with disabilities in discussions on diversity. I’m currently creating a community and a global movement around unhiding.

What I wish was known about disability by all

When we consider diversity, we frequently consider it in terms of sexual orientation, gender, and color, but we frequently ignore the greatest minority group: individuals with disabilities. Diversity is appreciating the various viewpoints and experiences that people have, and people with disabilities have a wonderful and unique perspective that is rarely heard.

Invisible disabilities like mental health, neurodiversity, or a chronic illness can also exist alongside visible ones like mine. And in both positive and difficult ways, they alter lives, no matter what shape they take. This is the reason it’s critical that individuals without disabilities learn how to be allies and advocates, as well as why it’s critical that people with disabilities be able to discuss their issues in an open manner. Here are some actions you can do to make it happen.

Learn for yourself

Understanding and analyzing your own views toward disability is the first step in doing this. Face whatever unfavorable ideas you may have about persons who have various disabilities. To better comprehend their experience, read books, watch shows, listen to podcasts, or have conversations with others. (Don’t know where to begin? Check out my website’s resources guide.)

Be mindful of the questions you pose

Everyone is interested in learning more about my missing hand, which is understandable, but consider your needs before inquiring about someone’s impairment. Are you inquiring out of personal curiosity or out of goodwill and a wish to help them? Consider your motivations.

Observe limits with respect

Never assume anything about the skills of others. In ways you can’t even conceive, people with disabilities have learned to adapt and accommodate. Rather than assuming control, inquire about how you may help someone. Respect physical boundaries as well. We are not allowed to touch someone because of their appearance without their consent.

Something else to bear in mind? Please don’t ask why someone has a handicap placard on their automobile because not all disabilities are obvious.

Everyone has something hidden

Through my advocacy work, I’ve come to realize that hiding is a common experience. My lost hand is merely a talking point. Giving each person a blank postcard and instructing them to write what they are hiding on it, then sending it back to me anonymously, is one of the exercises I undertake in my workplace seminars. Individuals have disclosed things like mental health disorders, difficulties in their families, financial hardships, abuse, political opinions, age, religion, level of education, addiction, neurodiversity, and physical difficulties—the list is endless. However, they all begin with the same sentence: “I’ve never told anyone this.”

It is draining and lonely to keep things hidden, especially from those we love, and it keeps us from receiving support and assistance. So why do we all engage in it? It’s our innate dread of being rejected because of our differences and our deep shame for being different. Despite the fact that it’s such a universal sensation, we all feel awkward discussing it. It’s time to put that right.