Lena Pepel suffers from a disorder known as prosopagnosia (face blindness).
- Having prosopagnosia (also known as face blindness) means not being able to recognize people’s faces.
- In severe cases, people cannot recognize their own face when they look in the mirror.
- In an interview with Bright Side, Lena shared her story and described what it is like to live with prosopagnosia.
What is prosopagnosia?
Prosopagnosia is a condition that is more commonly known as face blindness. As the name suggests, people with prosopagnosia struggle to recognize the faces of strangers, friends, relatives, partners, and even their own children. What is more, the NHS explains that “others may not even recognise their own face in the mirror or in photos.” Unsurprisingly, this condition can make life extremely challenging. Therefore, people with prosopagnosia need to use alternative ways of recognizing people (such as memorizing their voice, their walk, etc.)
Lena Pepel shared her story as she explained what life with prosopagnosia feels like.
For 29 years, Lena had no idea why her memory was so poor and why she struggled to recognize people. It was only a year ago when she finally got diagnosed with prosopagnosia and understood that there is a reason why. Now, she knows why she struggles to recognize her child, her husband, and even herself. Speaking to Bright Side, she gave details about her life with face blindness. Lena shared that when she was a child, her parents dismissed her complaints: “I tried to talk about my problem with my parents. But my dad dismissed the conversation after a hard day at work, saying that I should just be more attentive, learn poems by heart, and train my memory. My mom used to say to me, “Don’t make things up.” I understand her. Nobody knew about this disorder, and there was no Google back then.”
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As a teenager, she felt embarrassed and ashamed of her condition.
Lena used to struggle with physical symptoms such as headaches, migraines, nosebleeds, and low blood pressure. She felt helpless and hopeless when doctors could not understand what was causing these physical issues. “None of the neurologists who we consulted with because of my severe headaches could tell me what the problem was,” Lena admitted. “I used to be ashamed of myself, thinking that I was the only one who had this problem. Now I know that this is not the case, and I want to tell others about this condition. The public declaration is the last point of self-acceptance and the battle against my insecurities.” She hopes that her story will comfort those who are in her position as they find out that they are not alone.
What does face blindness actually feel like?
Having prosopagnosia does not mean not being able to see faces. Lena explains that when she talks to people and makes eye contact, she can see their faces perfectly. What prosopagnosia does is that the minute the conversation is over and the eye contact is broken, Lena forgets the person’s face. This means that if she were to see this person again, she would not recognize them. “I can walk past my ex-boyfriend and not even understand that it was him,” she shared.
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Lena uses alternative strategies to recognize the people in her life.
Living with prosopagnosia has forced Lena to come up with “life hacks” to help her recognize the people in her life. She notes that she does not try to memorize people’s clothes, facial hair, or glasses. Instead, she focuses on “permanent details” such as “a nose with a hump, noticeable moles, eye color, scars, and tattoos”. She explains that memorizing temporary details means that once the person shaves, wears contact lenses, or changes their hair color, she will no longer know who they are. “For example, my husband with and without a beard is like 2 different people to me. But I remember people well by the way they speak. My memory is a bank of voices. Voice is the most accurate identifier of a person.”
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She uses these same “life hacks” to recognize herself.
People with prosopagnosia struggle to identify themselves when they look at photographs or even their own reflection. Therefore, Lena needs to use the same aforementioned life hacks to help her recognize her own face. “When I look at myself in the mirror or in a photo, I understand who is in front of me thanks to the mole above my eyebrow, my hairline, a scar on my chin, and my turned-up nose. I know the features of my face and can keep them in my head.”
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In addition to these life hacks, she uses other things to help her identify her child.
Lena ensures that she remembers what clothes she has dressed her son in so that she can recognize him when she picks him up from kindergarten. “I buy him bright clothes on purpose because it makes it easier to recognize him among other children of the same age. It saves me that he runs to me shouting, “Mom!” when I come to pick him up from school,” she shared. Apart from his clothing, Lena has also given her child a bright orange plush frog backpack. “When I see this toad, I immediately understand that this is my child. I can’t recreate his image in my head, even though I started memorizing his features when he was just a baby,” she admitted.
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As one can imagine, living with prosopagnosia is extremely challenging.
What is worse, Lena confessed that she is often faced with aggression and criticism when she shares her story as people do not believe her. This makes an already difficult condition even more challenging to cope with. By sharing her story, she hopes to raise awareness and show people who struggle with prosopagnosia that they are not alone.
