When it comes to special needs families, the topic of sympathy can involve a surprisingly diverse range of emotions and elicit a wide variety of reactions. But no matter how it makes us feel, it seems to be something we can’t avoid. Many parents with disabled or neurodiverse children have weathered severe health crises, received difficult diagnoses, or grappled with their children’s problem behaviors—all with others as witnesses. Because of the often-public nature of our struggles, we tend to have strong feelings about receiving sympathy.
Sometimes I think, though, that we forget just how often we find ourselves on the other side of the sympathy equation. As disability parents, we come across tragic losses, painful incidents, and difficult stories more often than parents of typically developing children. This is especially true in the age of the internet, when we can connect with families like our own across the globe. For example, in the years since my daughter, JJ, was diagnosed with Rett Syndrome, I have watched as the children of friends and acquaintances have spent weeks or months in the hospital, suffered intractable seizures, or undergone critical surgeries. Sadly, every month or two I also hear about another girl with Rett passing away. There have even been a few times when my family thought JJ might be one of them.
Stories like these can be gut-wrenching and heart-breaking but are, unfortunately, an inevitable part of our lives. However, it wasn’t until a tragedy struck in our local community that I truly stopped to consider what a complex topic sympathy really is.
This winter a young boy in RoRo’s grade was hit by a drunk driver and ended up in the hospital in critical condition. Doctors put him in a medically induced coma as they waited for his brain swelling to go down, so they could examine his chances for survival. The accident was sudden, tragic, and completely unexpected.
As news about the boy’s condition unfolded, I found myself constantly refreshing my email, desperate for updates. Tears came to my eyes without warning, and I spent several nights tossing and turning in the grip of terrible nightmares. I knew all too well how it feels to watch your child fight for their life in a hospital, and I couldn’t help flashing back to that powerful mix of gripping anxiety and raw fear. As the days went by, I could feel myself slipping deeper and deeper into this black pit of negative emotions.
According to Familyfire (a website with particularly clear and helpful definitions for today’s topic), empathy is “entering into and experiencing the feelings of others.” This is what happened when I reacted so powerfully to another family’s tragedy. As caregivers, we know more than we want to about these types of difficult situations because we have experienced some of our own. When we slip back into our past and relive it, this can have a powerful effect.
Though it involves a deep level of caring, empathy doesn’t always serve us well. Often, it can become too intense too quickly. At this point, empathy is not only unhealthy for those of us experiencing it, but it also doesn’t do anything for the people who are struggling. That little boy’s family wasn’t helped one bit by my nightmares or worries. In fact, I doubt they knew I existed.
Not every other parent in our school community felt the way I did about the accident. Instead, some experienced a large amount of sympathy for the boy and his family. Sympathy, in contrast to empathy, is “the care, concern, and desire for other people’s well-being without entering into their emotional world.” Sympathy normally comes from a place of kindness. Even if the person feeling sympathy does not have a true idea of what someone else is going through, they are only doing what feels right and natural: expressing concern in the face of someone else’s struggles. Because of this, I rarely become upset when someone feels genuine sympathy toward my own family.
Not every caregiver feels like I do, though. Some object to others’ sympathy and dislike being on its receiving end. I suspect that when this happens, these people are conflating sympathy with the idea of pity. Pity involves “feeling sorry for a person in a way that belittles them” and is not something anyone wants to experience—myself included.
However, though pity is something we all want to avoid, sympathy is not without its problematic side. In my experience, one of the thorniest issues is the impulse to count our blessings when others experience difficult times. This happens because most of us are wired to use the tragedies and crises around us to remind ourselves that we should be grateful for the good things in our lives. As we watch someone else’s story unfold, we often cannot help comparing our own situation to theirs. Sometimes I see this impulse flash across people’s faces when they catch sight of JJ in her wheelchair. Parents of typically developing children steal worried glances at us, likely reminding themselves that their own children’s health and abilities are not things they should take for granted.
It is my belief that we don't need to punish ourselves for feeling this type of momentary gratitude. However, I do believe we should keep this impulse to ourselves. It doesn’t accomplish anything useful for others and can feel cruel to the person on its receiving end. I, for example, certainly don’t want to know when others feel this way about my own family or child.
Something that is helpful, though, is when people see others’ difficulties and take action. When my family struggles, other people’s genuine sympathy comes as a great comfort, but it is even better when the sympathy is accompanied by offers of help. Compassion is defined as “a reaction to someone’s distress in which caring feelings produce impulses to act in a helpful manner.” During difficult times, friends, neighbors, and relatives often act compassionately—bringing us meals, sending gift cards, and offering to care for RoRo. These gestures of kindness never fail to touch me deeply.
Compassion can feel just as good for the giver as it does for the receiver. Doing something, anything, can help us to avoid feeling powerless during a crisis. For example, a few days after the little boy’s accident, I advertised and donated to a fundraiser dedicated to his family. RoRo also wore his favorite color to school and, like other families in the neighborhood, we displayed ribbons and signs of support in our yard. It wasn’t much, but at least these were concrete and visible ways to show that we cared.
Unfortunately, a week after the car accident, the little boy in RoRo’s grade lost the fight against his injuries and passed away. Because I have never experienced the loss of a child, I can no longer imagine how his family feels. In other words, I can't empathize with their situation anymore. However, I do continue to feel deeply sympathetic, as does everyone in our community.
No matter our situation or circumstances, we all become better people when we show caring and compassion toward others. It is JJ herself who has brought this lesson home to me in the most profound way. At the age of five, my youngest daughter has faced down things the rest of us can hardly imagine. But she doesn’t let this stop her. The more adept she becomes with her speech device, the more she uses it to show how much she cares about the people around her.
When friends or helpers are sick, she asks after them. When relatives struggle with difficult diagnoses, she wonders if they feel afraid. When someone needs to be cheered up, she suggests we make them a card or send them a gift.
This is what I hold onto when I find myself struggling to navigate the complex web of empathy, sympathy, pity, and compassion. In these times I simply try to focus on the most basic of truths: that if JJ can show so much care toward others, then surely, I can too.
What are your thoughts about empathy, sympathy, pity, and compassion? Do you tend to embrace or reject them? Let me know in the comments below.