Unrelatability: Why Parents Like Me Feel They Don't Fit In

I am one of the primary caregivers for my six-year-old daughter, JJ, who has Rett Syndrome. Rett is a progressive neurodevelopmental disorder that profoundly affects the people living with it. This means that JJ needs full assistance with all daily tasks, gets her nutrition through a feeding tube, and uses an eye-gaze device to communicate. In the six years since her birth, I have slowly and steadily drifted away from the world of mainstream parenting onto a path of altered motherhood, finally ending up in a place where most other people cannot follow.

In the world of caregiving, we talk a lot about the physical isolation caregivers face, but it also takes a large emotional toll. My husband and I both struggle on a daily basis with a feeling of not belonging, of not fitting in. At its root, I believe, is our fundamental unrelatability. Most people simply cannot fathom the life we lead with our daughter.

Some of this unrelatability is due to the experiences we have gone through. My husband and I have received a life-shortening diagnosis for our child that most parents cannot imagine. We have almost lost her twice, nursed her back to health after surgeries, watched her go blind for a year until we got her seizures under control, and grieved the loss of her hand use, words, and independent mobility. We have watched her suffer and listened to her scream in pain more times than we can count.

But it’s not just my experiences as a disability parent than make me unrelatable. The differences run much deeper—down to my very core. I believe that those of us who become parents to children with disabilities and medical complexities undergo a seismic shift in our identities. Even the analogy of moving abroad cannot quite capture the depths of this alteration. Instead, it is as though we have moved to an entirely different planet. We now reside in a place where we not only experience things other parents cannot imagine, but one where we think, act, worry, behave, celebrate, connect, and believe differently.

One important example of these profound differences is how parents like me perceive and process emotional pain. My favorite podcast about disability parenting, The Rare Life, has an episode devoted to the idea of “pain scales.” In it, the show’s host talks about how disability parents have an altered way of evaluating what is painful. The more we struggle and watch our children struggle, the more these experiences recalibrate our pain scale. I am living proof of this. The day JJ received her Rett diagnosis, I felt my own pain scale double. The end result is that disability parents perceive the trials and tribulations of parenting much differently than typical parents do, and vice versa. For example, what feels like an 8 on the pain scale for one of our friends might only feel like a 2 for us. This disconnect can make it extremely difficult for us to relate to one another. All too often, disability parents frighten and shock typical parents, just as they can end up frustrating us.

Sometimes, though, differences are less about pain and more about navigating tricky social situations. My lifestyle can be so unrelatable that I often feel the need to mask it or downplay it when I go out into the typical world. When other mothers complain about busy activity schedules, for example, it’s often easiest for me to smile and nod along. Because what is the alternative? If I complained about my own parenting woes—JJ’s constant pain, the glitches in her speech generating device, my worries that I won’t be able to lift her much longer—it would bring the conversation to a screeching halt. Those mothers wouldn’t know what to say, and I would end up feeling unbearably self-conscious.

Trust me—I know from experience.

But this disconnect from the typical world of parenting isn't all bad. Once I began building relationships with other disability parents, I finally realized where I belonged. The deep bonds that parents like me form with each other mean that caregiver communities can be tightly-knit and extraordinarily supportive. I have seen parents help one another even under the most difficult of circumstances. Many of us also end up forging close connections with those who help our children—people like in-home carers, teachers, therapists, nurses, and doctors. And, when we are very lucky, we also strengthen our bonds with our romantic partners. The more my family struggles, the more my husband and I band together and appreciate one another. After all, he is the only other person in the world who truly knows what I am going through.

At its core, what makes unrelatability so painful is the fact that it hampers true connection and keeps us from forming meaningful bonds with others. But even though it makes things more difficult, unrelatability doesn’t have to put an end to the relationships outside of our disability communities and our romantic partnerships. Just because I might not understand someone different from myself and they might not understand me doesn’t mean we can’t appreciate one another. Every time someone offers to help me, shares a laugh, makes me feel truly seen, or asks after JJ, I feel a wave of gratitude that can extinguish our differences. In the end, human beings all want to connect with one another and feel like they are a part of something larger. Whether this happens to us often or only once in a while, with someone who is similar or different, it’s really that kinship that matters most.

How do you feel unrelatable? Are there any communities or places where you feel you do fit in? Let me know in the comments below.