Guide for Friends and Family

When someone is newly diagnosed with a known, serious, and potentially fatal condition, like cancer, their community gathers together to support the patient and their family. Someone takes charge to organize meal trains, people regularly check in to find out how the patient is feeling and how the family is managing, people take the time to consider what kinds of accommodations might help the patient feel more comfortable, people demonstrate an understanding and recognition that the patient and their family is suffering and needs support.

When my dad was diagnosed with terminal cancer when I was 13, our community gathered together to support our family. Friends drove my parents up and back from Connecticut to NYC for my dad’s treatment, made sure we always had groceries and meals, made sure my sister and I had rides, and so much more.

One of my dad’s nurses once told my mom that she could always tell when someone had been sick for a long time because the number of cards and flowers would always decrease or disappear, the amount of attention that sick person and their family would receive would dwindle.

Though we were incredibly fortunate with the support we received for the four-and-a-quarter years my dad was sick, there were people who seemed to run out of stamina supporting us - and seemingly forgot to do so after my dad died.

As I’ve gotten older and have had time to reflect, I’ve come to believe that the reason for the decrease in support that so many experience has more to do with overwhelm and cluelessness than it has to do with indifference. Most of us are living very busy lives, often struggling just to keep up with our own personal needs - so adding on helping others can seem unmanageable, especially to do so long-term. I’ve also come to learn that a lot of people don’t know how to support other people and might worry that they might be in the way or intruding or generally feel insecure about how to reach out.

I think the same explanation applies for why people don’t tend to offer adequate support and understanding to those of us living with chronic conditions. I believe there’s an additional challenge in the chronic illness context because unless you are living with such a condition or you’re a regular witness to someone who is, you very likely don’t understand what our experience is.

While every person living with a chronic condition has a different experience, there are many common threads. My hope is to use this website to educate our communities about what life can be like for someone living with chronic conditions - the physical, emotional, mental aspects that can make us feel “other.”

Whether you are aware of it or not, you know someone with at least one chronic condition. These conditions are not rare - they are rarely diagnosed, and rarely talked about. I can assure you that someone in your community, whether it’s a friend, family member, colleague, or neighbor, could benefit from you learning what our lives are like and learning to show more compassion and empathy.