When the boys were younger I used to host the greatest ever playdates with my friends. Each of us had husbands with grueling working hours and we discovered that these playdates provided the mothers with the support we were all craving. It was a village where we listened to each other and stepped in to help raise each other's kids. An instant mood booster and pure joy for the kids and babies. I remember that after diagnosis I was still having these playdates but some days I was not enjoying the conversation as much as I always had. I would explain challenges I was having with the boys looking for support but no one in my circle could really lend any advice. None of them knew what it was like to be in my particular shoes. None of them had a child with anything at all similar to a rare disease, or a child with constantly changing physical needs, or even a child who with similar learning disabilities. I felt lonely in a room of my favorite people.
My friends and family care very deeply about me and the boys, and have always done their best to support me when I need it. But there's always this feeling that they just don’t quite get it. Not one of them can understand the constant mental load of the research, the decisions, the appointments, the terminology, or the constant fear of what the future holds. And there is no guide book for them to turn to, to even begin to know how to be supportive. And I see in their eyes that they want to be there for me, but they just won't ever fully understand what it's like for me. I was surrounded by my favorite people feeling completely alone.
I’ve found that people really truly have good hearts, that they often offer an “I’m so sorry” or “stay positive,” when they don’t have any useful advice to offer. Don’t get me wrong, I fully appreciate those kind words of support, they just don’t help me feel any better. It can be exhausting explaining the problems I am faced with constantly. Before I even get to the difficulties I’m having I need to first explain why normal things in life can be a challenge for my kids. The problems can be small, like trying to find a stepstool with handrails small enough for little kids, or finding a double stroller that could wheel around a 7 & 10 year old. Sometimes the challenges are much larger, like trying to select the most promising drug trial. I often listen to my friends talking about ordinary parenting problems sometimes wishing those were my biggest problems.
I often leave my friends feeling guilty. Here they are trying their best to support me in the unknown and I feel guilty because none of it is working. It is literally impossible for them to begin to understand what it's like in my shoes. And as time goes on, the further and further I get. As the boys get older I'm looking at mobility challenges for my son who is now part-time in a wheelchair, while most of my friends are trying to juggle busy baseball schedules. It's not their fault, and they try their best, they just won't ever truly understand what it's like. I know how lucky I am to have their support but sometimes being around them I can feel isolated as I navigate the unknown.
Over time I became more active in advocating in the awareness of my children's rare disease. And suddenly my direct messages were filled with other parents going through similar situations. I began chatting with other rare-disease parents regularly. I even have a small text message chat with a group of moms whose children are about the same age and have the same disease. I found people who “get it” and we can support each other. Sometimes it’s lending an ear, other times is sharing problems we face and solutions we’ve found. None of us are in the exact same shoes of course, but it can be relieving to find people who don’t need an entire backstory every time you try to explain something. They just know what you're going through. And I appreciate giving that back too.
I still turn to my friends and family for support because their support is unwavering. But I’m grateful for the rare disease community that I can call on when needed. Finding people who understand this certainly makes me feel less lonely, but it doesn’t completely erase the feeling of isolation at times. I’m still navigating the unknown, but that's part of carrying something rare. The loneliness isn’t because I’m lacking support. Finding people who understand doesn’t erase it; it just means I don’t have to carry all of it alone.
