A Private Look Inside a Closed Online Rare Disease Community

by Laurie Bartolomeo

Online support groups are helping rare disease families cope with the unthinkable. Here are just 3 ways one such group has empowered my family.

My son was diagnosed with infantile spasms (IS), a rare and catastrophic seizure disorder, when he was just 11 months old, a diagnosis that would change the course of all of our lives forever. The initial shock and grief surrounding his diagnosis is difficult to describe, but during the weeks and months that followed, my family and I found strength in an unexpected source.

Not long after the diagnosis, I committed myself to learning everything I possibly could about my son’s condition. I was determined to ensure he would have access to the best possible care and that he would never miss out on a medication or therapy that could help him live his happiest, most fulfilled life. I spent hours each day diving deep into community message boards, posting questions, reaching out in every direction for someone to pull me in—when finally, someone did. An administrator of a closed Facebook group found me and reached out. The group, she said, was open exclusively to parents of children with the exact same diagnosis as my son’s—all of its members going through the same experiences that I was. The value of this was, and continues to be, paramount in my life.

There are countless ways in which this group has helped my family. Here, I’ve tried to capture the top three.

1. First, my involvement in the IS support group has helped tremendously in the creation of my family’s “new normal.”

Every day, we face unique and difficult challenges associated with my son’s condition that may be hard to imagine. Everything from logistical challenges that come with his physical disabilities, to the emotional burden of constant worry and anxiety, to the financial implications of his therapies and services—our lives will never be “normal” again. Yet, being connected to so many other families that are dealing with these same challenges and talking or posting about their experiences makes it all feel less overwhelming, less daunting, and surprisingly, more normal.

Take, for example, my Facebook feed. In addition to joining the closed support group, I have become Facebook friends (and in-person friends!) with many of the other IS moms, and their posts and photos make up a large part of my feed. This means that when I am on Facebook, whether I am on the support group page or not, I am usually seeing photos of kids who look just like my son, or I am reading posts about issues to which I can personally relate. I might see a child taking her first steps at the age of 7, or hear requests for prayers for a child in the hospital. It makes me feel connected to so many others like us, and it makes some of the most unusual challenges seem more commonplace. A rare disease means a rare life, but it can also lead to some pretty extraordinary friendships founded on common ground.

2. The second most valuable aspect of these online communities is that they are excellent venues for crowdsourcing.

I am deeply comforted to know that any uncertainties or questions I have can be quickly and easily posed to thousands of “expert” moms who will give me their honest answers or share similar experiences within minutes. This can be incredibly helpful in certain situations such as when starting a new medication or therapy, researching various brands of medical equipment, finding experienced specialists, or even just looking for tips on how to make our lives more manageable.

One common practice in our group is to share videos that enable us to compare seizure movements that our children experience. There is an implicit level of trust in the group: what is shared there, stays there. Nothing that you see or discuss in our closed group is ever shared publicly, and members can feel free to ask whatever they want to, regardless of how personal the topic may be. There also exists an absence of judgment that can be difficult to find in other areas of mainstream life. The members of my group have been through some of the most painful situations imaginable, and these situations have toughened them and made them more resilient, but also made them incredibly empathetic of others. Regardless of what is asked of them, rest assured they will answer you with honesty, acceptance, and understanding.

3. Lastly, and perhaps most importantly, belonging to an online rare disease community has added a large, much-needed dose of levity to heavily burdensome situations.>

Faced with an uncertain and unpredictable future, it is common for many caregivers to feel varying levels of worry, anxiety, and depression, sometimes on a daily basis. Dealing with a rare disease is not for the faint of heart. It requires commitment and resilience, and yes, humor. My online IS family provides me with an endless stream of support and knowledge, but honestly, one of the most important things the members do for me is to make me laugh.

Moms of other g-tube­–fed kiddos (affectionately referred to as "tubies") often post about common feeding mishaps we’ve all experienced—everything from finding an unsecure connection in the morning that resulted in “feeding the bed,” to incidences of crafty kids managing to pull their tubes out in the most inconvenient places! Other parents start humorous threads designed to highlight our shared experiences and lighten our day. For example, “You know you’re a special needs parent when... (fill in the blank)”; or “The worst thing that was ever suggested to me at an IEP meeting was... (fill in the blank)”; or even, “The most random and embarrassing place I burst into tears was... (fill in the blank).”

Often, our ability to laugh at ourselves and our situations is the only way we know how to make it through the toughest of times, and who best to make you laugh than the people who understand exactly what you are going through? So, for all of the advice, experience, and information that comes from being in this group, connecting with others on an emotional and human level is by far the most valuable service it provides.

I have always been a believer in the idea that people come into your life at certain times for a reason. The day that a fellow IS mom found me floundering around on a community chat board and invited me into this close-knit community was one of the most important moments in my family’s journey. Today, I am stronger, smarter, and more determined than ever because of this group that is always behind me and rooting for me. It is due in part to these people and their support that I can be the warrior mom I need to be, for the strongest fighter I’ve ever known, my son.