Growing up, I was taught that feelings like sadness, disconnection, and isolation were dark, scary, and not to be discussed. When I expressed discomfort, I was showered with toxic positivity: “it could be worse,” “it will all work out,” and “everything happens for a reason.” Here’s the thing - we all feel sad, disconnected, and isolated sometimes - and with current needs to social distance, these feelings may be more present now than ever. Plus, as an affective scientist and therapist, I feel the need to add that these emotions provide important information about our motivations, relationships, preferences, and values. Experiencing loneliness does not mean that I do not live a fulfilling, joyful, and worthwhile life. Instead, embracing the loneliness I feel as a person with a rare disability has cultivated connection.
When I was diagnosed with Stargardt’s at age 17, no one I knew had ever heard of the condition. Until my mid-twenties, I had very limited connections with the disability community or people who had experienced vision loss. The lack of connection to others with similar experiences meant my process grieving, adapting, and accommodating my changing needs was a private one. Sure, I would share with my sighted family and friends which pieces of assistive technology excited me, but I didn’t have anyone to talk to about feeling left out, experiencing microaggressions, or encountering structural ableism.
Around the time I started graduate school, I began partnering with local nonprofits and discovered resources like Facebook groups, blogs, and youtube channels that offered information and a venue for connecting with others. I began educating myself in disability studies and the history of ableism. I read books, essays, and poetry, including works by a professor with Stargardt’s at Berkeley. At age 27, ten years after my diagnosis, I met someone with the same diagnosis for the first time. Since then, my brother has presented with the same condition, and I have become friends with a fellow Berkeley graduate student also with Stargardt’s. These personal relationships, alongside self-exploration in therapy and through this blog, have helped me understand the features of rare disability that can be so isolating.
Feelings of disconnection result from a sense of being different, misunderstood, and not belonging. Having a rare disability means that I am regularly the only one in a given setting who needs accommodations or special assistance. I spent years wondering “why me?” and "how will anyone understand?" That anger and resentment masked my grief and prompted greater isolation. When I instead moved towards fully accepting my loneliness, I came to also recognize my need for connection with others, especially around shared vulnerability. I felt like I didn’t belong, the way others feel they don’t belong, and if we all feel that way, doesn’t that mean we all belong? I have discovered that the best inoculation to my feelings of loneliness is to own my story and connect with others to honor and appreciate what is beautiful and unique in the diversity of lived experience.
I have also learned how and why connecting with others does not mean continuing to promote toxic positivity. When someone insists, “it will all be totally fine,” they are suggesting that there isn’t really a problem and we shouldn't be stressed, which communicates that it isn’t valid to feel the way we’re feeling. Emphasizing “everything happens for a reason” in the context of tragedies like COVID-19, racial injustice, illness and disability, poverty and homelessness, and more is hurtful to those of us in the midst of those hardships. Hardships do not always happen for a reason, and being upset in these situations is justified. These attempts at "looking on the bright side" exacerbate feelings of disconnection and add insult to injury by shaming someone for their feelings. Although unintentional, the focus on the positive shuts down the conversation.
I hope to normalize and hold space for the feeling of loneliness, especially for those of us with rare, stigmatized, or marginalized experiences. It’s okay to not feel okay. And it makes perfect sense that we feel isolated and disconnected at times. This does not mean we forever wallow in isolation. We can learn from our sadness and loneliness to make the most out of our situations. The only way we can really do that though is by accepting our circumstances, good and bad. I accept that my life with a rare disability will be lonely, and this loneliness does not prevent me from living a meaningful life. Instead, it is the acceptance of my loneliness that motivates me to share my story, connect with others, and advocate for and empower vulnerable and underrepresented populations.
