"I hope that my life experiences can make someone else’s journey a little easier.”
Each person with FOP has a unique experience, but that doesn’t mean anyone has to go through it alone. Patrick Doerr, who was diagnosed with FOP at six months old, knows the importance of a good support system and is now hoping to help others as a mentor.
Though diagnosed very young, Patrick wasn’t affected by FOP much until the age of 17. He’s been able to build a career as a financial systems analyst and is surrounded by family and friends, but also knows the fears that can weigh on someone with FOP. Patrick says that for him they boil down to a fear of being a burden to loved ones. “I know the people who love me would never think of me as nor treat me as a burden, but I go out of my way to set up my schedule and my paid aides to help me with my day-to-day needs. I also enjoy working and do not want to lose that.” Working in an office is not practical right now, but finding the right mix of technology allows Patrick to keep going. Having people to lean on makes a huge difference as well.
“For mental health, I talk to all of my support network while reserving the more impactful or serious issues for several extremely close friends or family members,” said Patrick. “I talk to different people about different things. Some people are good listeners and problem solvers. I use them as sounding boards to talk about problems I’m trying to figure out. Other people have overcome some of the physical limitations I have, so I reach out and talk with them when I’m trying to figure out my new normal.”
As a mentor in the FOP Connect Peer Mentor Program Patrick is eager to help other community members develop their support network. He realizes chemistry is important in developing relationships and sees the value in connecting with the best people for you, not just anyone you can find.
“Chemistry leads to comfort which leads to a deeper honesty and openness in how a problem is handled … If you feel comfortable with a person, you will develop trust because you feel that person has bought in to helping you and supporting you.”
When true connections are made, daily life is not as hard. Patrick has experienced that difficulties do not have to be impossible to face when you know you aren’t alone. He’s grateful for his friends and family as well as the IFOPA and FOP community—and wants to take what they’ve given him and pay it forward.
“I’m extremely lucky that I have the support network I do because not everyone does,” said Patrick. “I hope to provide an outlet for frustration, advice to overcome obstacles if necessary, and an ear to listen. I hope that my life experiences can make someone else’s journey a little easier.”