Sharlotte’s life with Congenital Sensorineural Moderate Hearing Loss and Hypermobility

Hi, my name is Sharlotte Friedman. I’m seventeen years old and I love to crochet anything that I can imagine. I also happen to live with two invisible disabilities; congenital sensorineural moderate hearing loss and hypermobility. Here’s a view of what my life is like!

---

Question: If you weren’t born with your condition, what do you miss the most from before? What do you grieve from your prior experience? And what’s one thing you were able to do before that you’re no longer able to do?

Sharlotte’s Response: I grieve not having to constantly calculate how much standing and movement each situation will demand. Standing still tends to cause more discomfort than walking, and at times, all movement—or even remaining still—results in knee pain. Regarding my hearing, while I was born with the impairment, I've become increasingly aware of its impact over time. I deeply miss the ease of following conversations without the intense fatigue it now brings. Mentally, this strain has taken a significant toll; participating in conversations is exhausting, but not being part of them leads me to experience a strong sense of FOMO and imposter syndrome.

Question: What are the main symptoms you experience?

Sharlotte’s Response: My primary symptoms include fatigue, joint pain, and a heightened sense of anxiety whenever there is even a slight change in how my ears feel.

Question: How does your condition affect your daily life and school?

Sharlotte’s Response: I find it challenging to hear teachers and other students clearly, which makes it difficult for me to participate in conversations that seem effortless for others. This is particularly painful, as it affects my social interactions with friends. Additionally, I frequently have to navigate misunderstandings with teachers, who may forget or not fully understand the accommodations I need. Certain classrooms, such as the art room, are practically "dead zones" for my hearing due to their design, which further complicates my ability to follow along.

Question: What are the toughest parts about living with this condition? Be as specific as possible!

Sharlotte’s Response: One of the hardest aspects is the lack of understanding from others, partly because my condition is uncommon. Since I was born with this hearing loss, it’s my “normal” hearing, so I struggle to explain it to others. I’m highly sensitive to certain sounds, and I can experience panic attacks from auditory overstimulation. But even though I can hear people speaking, I often have to ask them to repeat themselves multiple times or end up misunderstanding what they said. I try to make light of it by interpreting things humorously when I get it wrong—it helps people see the funny side, so they don’t treat me as if I’m clueless.

Because I don’t “look disabled” or “look deaf,” people often forget, even my parents at times. Constantly reminding others that I genuinely can’t hear feels like I’m seeking attention, which is uncomfortable. I’ve had countless people respond to my requests to speak up by saying that they have bad ears too, or they “probably have the same thing” because they sometimes miss what people say. But this isn’t a minor issue or something to joke about—it’s a part of me that I work extremely hard to manage just to appear “normal” and keep up with daily tasks.

People often fail to understand that hidden disabilities are real and aren’t just “self-diagnosed” trends. I experience fatigue after social situations, not because I’m antisocial—in fact, it’s the opposite. I love being social, but I put all my energy into hiding my differences and avoiding being seen as annoying, holding others back, or being “different” in a way that could set me apart.

Question: What tips or strategies have helped you manage your condition?

Sharlotte’s Response: Self-advocacy has been essential. Unfortunately, I didn’t have consistent support from my schools from preschool through mid-grade 11, so I had to learn how to advocate for myself. Self-advocacy teaches you how to approach situations with teachers or professors, how to discuss your needs in a mature way, and how to work collaboratively to find solutions. Many teachers have commented that my habit of proactively checking in with them—even when they already have summaries of my accommodations—is both useful and appreciated.

Question: What kind of support (from friends, family, or others) has been most helpful?

Sharlotte’s Response: The most helpful support has been when people simply “keep an ear out” for me. For example, when friends quietly recap parts of conversations I may have missed, it’s incredibly useful. It’s also a huge help when people make it clear whether they’re addressing me or not, so I don’t waste energy trying to follow along unnecessarily—my mom has been especially mindful of doing this. Additionally, the understanding from school staff regarding my sound sensitivity during tests has been a true blessing. I really appreciate the support from my school’s resource center!

Question: What’s one thing you wish people understood about living with a chronic condition?

Sharlotte’s Response: I wish people understood that I cannot just “listen harder!” I’m often asked to do so as if that would solve everything, but it’s simply not possible, and it’s frustrating that this can be so hard for others to grasp.

---

You are never alone! Join our community today for unconditional support!