Patients and Families
Chris Gillooly Shares the Importance of Resilient Living for Families
The Realization
Chris Gillooly doesn’t remember a time before his sister, Sara, had FOP. Just two years older than Sara, who was diagnosed as a toddler, Chris grew up with FOP simply being a part of his family’s life.
But life got complicated as Chris started school. He became aware other kids had lives that didn’t look like his. Once Sara started school, the differences were more pronounced as teachers looked out for her safety and she couldn’t do activities the same way friends did. After Sara’s mobility was compromised, Chris broke down.
“I was in bed one night and realized she wasn't going to be able to do a lot of things like riding bikes and skateboards with us and doing all the normal things. I remember going to my parents’ room in the middle of the night upset and crying,” said Chris.
“In that moment, the conversation was ‘Yeah, that’s true, but there’ll be ways she can do certain things,’ sort of brushing it off...they wanted me to not worry, saying it’s down the road. And it was something we never really came back to, we never sat down as a family and talked about and dealt with it, especially all the emotions around that.”
Challenges for the Glass Child
The challenges of living with FOP are most often thought of for the person who has the disease. Yet those around them also feel the struggle of life with FOP, especially close family members.
Chris acknowledges feeling the impact of two types of issues. One, called the glass child, describes a child who feels invisible to others and looked through or past while their sibling receives more care and attention for big needs. The other issue is a type of survivor’s guilt where a person feels they don’t have the right to be disappointed or depressed because they have more of something or a better life than someone else.
Without direction for how to deal with the weight of FOP on people he loved, Chris developed unhealthy habits. He tried to be a good kid and wanted to be perfect so he didn’t give his parents more to worry about. He did what he could to help Sara feel involved or comfortable. In trying to make life easier and less chaotic for everyone, he carried a lot of heaviness himself.
While he knew he was emotionally fragile, Chris never dealt with the stress and eventually used alcohol and other substances to cope. He ended up completing a month of inpatient treatment for substance abuse and sees parallels between the tools and strategies he learned there and the Resilient Living resources being shared by the IFOPA. It’s all provided clarity on the damage of avoidance and how to properly engage with the pain experienced over time and the daily realities of FOP.
“I think a lot can be traced back to grief and loss around Sara and the life I feel she got cheated out of,” Chris said. “A mapping out of what it was going to look like, even hypothetically, and ways we were going to try and help her life be more full would’ve given me more feelings of control and participation. It would’ve helped with some of the helplessness I felt.”
Help When You Feel Helpless
Chris describes helplessness as a major concern for siblings and families. It’s hard to process not being able to fix things, to stop FOP or even provide a break from it and make someone comfortable. He’s found it takes time, therapy and a good support system. It also requires honestly talking about all of the feelings involved and he appreciates the ways the IFOPA is facilitating that for families.
“The Resilient Living portion of the Family Gathering in 2019 was helpful and I’ve got the workbook and 10 Tips for Resilient Living in a place that I look at them pretty often. It’s important to have those conversations, especially being there with my family, to discuss techniques we can use together,” said Chris.
“Our relationship is stronger than it's been in a long time. We started talking about all the issues and the mental health of each family member and not just the physical and mental health of Sara, which can be an escape from talking about your own issues.”
Stay Connected for Support
For a time, Chris feels his family distanced themselves from the FOP community because it was overwhelming. As they have reconnected recently, he’s realized the shared experience is a key part of healthy support along with group therapy.
“It’s helped us a lot to feel less isolated...we're not failing at this, these hardships are universal to everyone in our situation,” said Chris. “Staying with treatment and sticking with therapy and a support structure is the best thing to ease the burden. It's the reminder every day of yes, this is hard, and you're allowed to feel that way.”
For individuals with FOP, siblings and caregivers just beginning their FOP journey, Chris emphasizes taking advantage of the opportunities for education and building resilience. He’s grateful the IFOPA and many FOP families are sharing how to communicate and get help so more people have internal strength and a community to lean on when things get tough.
“This is crucial,” Chris said of the Resilient Living Program. “It makes me feel more confident that families starting on this path are going to have a healthier support structure.”
You no longer just have to attend the FOP Family Gathering to participate in the IFOPA's Resilient Living Program. The IFOPA now also offers an online educational series of short webinars followed by online discussion. Topics change monthly and are recorded, so if you can't make it you still have an opportunity to learn about a resilient living tool. Watch the series.
