I’ve always loved Robert Frost’s poem, “The Road Not Taken.” As a child I found it especially poignant because I empathized with the character that agonized over which road to take. When you are young there are so many possibilities that it is hard to make that sort of decision. As a child I dreamed of being lots of different things, including a dentist, princess, architect, writer, dancer, vet, or physicist. I blame the Disney movies for making me think it was so easy to become a princess, lol. Although as you grow up, the possibilities start to narrow and the choice about which path to take becomes more clear.
In high school I was very focused. I graduated with a GPA of 4.25 and was a valedictorian. Then I went to college and got my B.S. in Chemistry from UC Berkeley. I taught ballet on the weekends with my mother to help put myself through school. After graduation I married a nice, intelligent, hard-working man. I went on to one of the nation’s top tier pharmacy schools. I studied very hard in pharmacy school and achieved a 4.0. I was planning on doing a residency after pharmacy school and then starting a family. I thought I did everything right. But at 24 years old my life came crumbling down, and I’m still trying to put the pieces back together, but the current figure bears no semblance to the original.
What happened? I got my first hip labral tear at 24 years old from a ballet injury, which was only the beginning of my journey with hip problems and chronic pain. I went from a normal person to being in so much pain I could barely sleep or eat. I couldn’t make it to many classes because sitting in a chair induced severe pain as well as standing. I had a BMI of 18, but it dropped down to 16.5 because I lost 25 pounds. The pain of hunger barely compared to the pain in my hip, and I ceased to be hungry. I did manage to graduate pharmacy school and get licensed. I thank God quite often that I was able to do that because my health issues made the last 1.5 years of pharmacy school very challenging. I had to work 60-80 hour weeks with a bad hip. To this day I don’t think any of my pharmacy classmates knew what was going on. I simultaneously had a bad case of Achilles tendinitis and wore a removable cast, so I think some of them thought that was the extent of my health issues. There were only 120 of us, so we were more like a high school class than a college one. I was ashamed and embarrassed about my hip problem, so I just didn’t talk about it unless someone was a close friend or family member.
It’s a bit ironic that at 24 years old I thought things couldn’t possibly get worse, but they did. One thing I have learned is that it doesn’t matter how bad your situation is, it can always get worse. Multiple joints started deteriorating and I’m not even 30. I was recently diagnosed with Ehlers Danlos Syndrome Type III (hypermobility type), a connective tissue disease, causing defective collagen. It’s an autosomal dominant genetic disease meaning I was born with it. Collagen is in pretty much every body structure, so the health effects can be widespread. People with severe cases often have a major cardiac or other organ problem before they are even 40. I’ve had health issues throughout my life related to this, but nothing major until 24. I’m 29 now so I’ve been dealing with chronic pain for 5 years now. My sister does not have it, thank god. I’m pretty sure I got it from my mother, and she got it from her mother. Both of them are undiagnosed at this point, and since my maternal grandmother is dead, I will never know for sure if she had it.
Although unlike the character in Robert Frost’s poem, I didn’t really CHOOSE the less traveled path. More like chronic pain held a gun to my head and forced me to walk down the alternate path. I begged and cried as I was forced down a road covered in implacable darkness, but chronic pain has no mercy, so I used every bit of strength that I had to keep walking all the while hanging on to the hope that I might eventually escape his grasp. Unfortunately, I never will. Because of the EDS I will likely never have another pain free day until I die, and that was a very difficult thing to accept. I will have ups and downs, but my joints will get progressively worse. Right now I’m going on my 3rd hip preservation surgery and Dr. S at Hospital for Special Surgery is going to be my surgeon. I had different surgeons for the other hip surgeries which I will explain in another entry. I’m scheduled to have an open surgical dislocation + femoral derotation (secured with a blade plate) + capsule plication +/- hip labral repair and/or labral graft +/- posterior impingement removal.
After 5 years of debilitating chronic pain, I am finally learning to accept it, and I can see a glimmer of light towards the end of the path. Chronic pain will be with me until the day I die, but I am trying to learn to work with him instead of fighting for control because pain will always win that battle. So that’s where I am right now. I realize no one is probably going to read this, but I hope I can help others and let them know that they are not alone. Being young and struggling with a debilitating illnesses or injury is very difficult because people often have a narrow minded approach to what someone with chronic pain or illness looks like, and a young healthy APPEARING person doesn’t fit the criteria visually. I’m hoping to spread awareness of EDS, hip problems, and other health issues with this blog. Chronic pain is not who I am, but it has become a huge part of my life. There may be entries in the future about cats, video games, writing, gardening, nail polish, or makeup because I have lots of interests that don’t include hips or EDS. Did I mention cats? XD I have two kitties, and I love them so much. I’m hoping to have kids in the future, but my kitties will always be my fur babies :3 I have more pics of my cats than I’m willing to admit, lol.
I’ll post a picture of me below because I think it’s important people see what someone with chronic pain looks like. The smile is nothing more than a facade to hide the tears. I can pretend I’m fine, and I like to do that in pictures. I’m holding a Cloud plushie from the video game Final Fantasy VII, one of my favorite video games.