Finding Support Through Facebook

June 7, 2017- the day I found out my life would never be the same. After many tests and doctor’s appointments, I went to see a surgeon thinking I had torn my labrum while playing flag football. I found out I not only tore my labrum, but had hip dysplasia. Hip dysplasia is a genetic condition that I have had since I was born and it went undetected until I was 18 years old... I could not believe it. None of my family has ever had hip problems so why do I? 

Doctor Watson informed me that having surgery on my labrum would be pointless unless I had surgery for my hip dysplasia as well. I would have to let him break my hip and femur in three different places, take out part of my hip, shave it and my femur, and screw it back in (the full operation is called a Periacetabular Osteotomy), and then repair my labrum through an arthroscopy. I knew I had no choice with the amount of pain I was in, and if I chose to put it off, I would end up needing a totally hip replacement. Knowing I had to start school two months later, I didn’t have time to waste and ended up scheduling my surgeries for two weeks later.

None of my friends understood how serious my operation was going to be and I felt so alone and scared. I spent countless hours googling my operation and looking for support groups, and finally came across one on Facebook- “Periacetabular Osteotomy (PAO).” At first the group was scary. People posting photos of their shark bite-looking scars, complaining about how much pain they were in and how depressed they were was all I seemed to come across. I began to ask questions about the operation and what to expect; I even mentioned I was scared seeing everyone’s negative posts. I received so many messages with people’s positive stories, advice, must-have lists for the hospital and home, and all sorts of other helpful things. I finally felt like I had other people who understood what I was going through.

The three days leading up to my surgery, I had freshman orientation at The Florida State University. My surgeon required that I quit taking all of my pain medications a week prior to surgery since they were blood thinners and it was well-known that I would lose a lot of blood during my operation. Due to the pain I was in and lack of medication, I was in a wheelchair the whole time I was at orientation and was shocked at how hard it was to get around campus. Almost every building had “wheelchair accessible routes” but some were hardly accessible (to get into Suwanee I had to wait 20 minutes for someone to open a back door in the kitchen, and then another 20 minutes for them to move things and make a path for me).

I posted in the PAO group and found out many other campuses, such as Western Carolina University and Harvard, have the same issues. Orientation was very frustrating for me, and speaking with everyone in the PAO group made me realize that things needed to change on our campuses. Even though the group is diverse and spread out all through the United States, we all deal with similar issues and want to see changes made. We all belong to our small hip dysplasia community, but want things to change in our larger, more inclusive, disability community.

June 22nd, I had my operation. It lasted five hours and I was so drugged up that I do not remember anything from that day or much of the next. I spent seven days in the hospital, three of those unable to walk. On day four when I walked it took me 45 minutes to walk twenty feet. I had a belt wrapped around me, two physical therapists holding onto me, and a walker I was putting all of my weight in. I didn’t feel like a person; the way I was being treated made me feel like a baby. I posted in my group about feeling so helpless and vulnerable; many people said it was hard for them at first, but to see the progress they made makes it all worth it…and those words of encouragement was how I knew I was going to get through it.

I struggled with post-operative depression for about three months and went to counseling, but my counselor, who- no matter how hard she tried to- could never understand what I had gone through, and was not as helpful as my PAO group. Quotes, personal stories, books, songs- all types of posts in the group got me through the darkest time of my life. The one quote that stuck to me was “the hardest part is realizing that no one knows what you are going through, and you should pray every day that they never have to.” It is so difficult to have people close to you undermine what you have gone through and overcome. The group was one of the biggest blessings I have ever had.

Just looking at everyone with hip dysplasia, you would never know something is wrong. Everything is internal and chronic pain is not visible. People of all different ages, races and genders who you would never think are connected to each other have formed an online community to uplift each other and work together to be the strongest individuals we can be. Two thousand people all over the nation with messed up hips have gone through an intense surgery and have each other to lean on in our hardest times. I could never have imagined that a Facebook group would change my life in the way it has.

Two months after surgery when I began physical therapy and started walking with one crutch, everyone gave me specific questions to ask my physical therapist and things to try on my own. With everyone’s advice, I felt prepared to conquer physical therapy and finally ditches my walking aids!

Fast forward to six months post-operation and some of us (members of the PAO group) have started a special group “PAO Warrior Accountability Group,” for those of us who can work out and want to make sure we are doing what is best for our bodies (specifically our hips). Going to the gym with people who have not had my surgery is difficult because they do not understand there is a lot I cannot do, and it frustrates me when I cannot keep up. Being in the accountability group helps me figure out alternatives and how to push myself in a safe way.

The most rewarding part of belonging to the Periacetabular Osteotomy Facebook group is being able to comfort and help others. Through the group, I met the mom of a local high school girl who was diagnosed a month after me. The mother, Angela, did not want her daughter, Olivia, in the group because she was afraid the negative posts would scare her. Angela and I messaged a lot around the time of my surgery, and she ended up taking Olivia to see my surgeon for a consultation the same day as my two-week check-up. I met Olivia in the waiting room and we immediately hit it off. In the weeks leading up to her surgery, I answered any questions she had and constantly reminded her that it would all be worth it in the end. Now, seven months later, Olivia is one of my closest friends. She calls me for advice or sometimes just to share her accomplishments that other friends may not fully appreciate. I never thought that being disabled would be something I would proud of but I am- I am proud to have gone through so much at such a young age and have an online community of women just like me who help and support each other through everything.