We start developing our personal narrative as children, this story defines who we think we are based on where we come from and our life experiences. But, as the saying goes, “life happens” and when it does you need to be able to change your story and adapt.
Throughout high school, I was not the highest achieving student, but I never struggled. I maintained a solid A/B average without putting much effort in and I was okay with that. I was much more interested in extra curriculars than school anyway. My grades were good enough that I got into the local University with little effort. I didn’t even study for the SAT’S. Looking back, I realize that was a tad reckless. My scores weren’t phenomenal, but they got the job done.
In undergrad, I had to work a little harder but I still did well. I had a study style that worked for me. I put very little effort in most days and crammed before major projects were due or if I had an exam. I told myself and everyone else that I worked better under pressure. While that was true and still is, I learned later that I had pretty serious ADD (Attention Deficit Disorder) which was keeping me from being able to focus except in short bursts.
After I got my bachelor’s degree, I took a year off and went to work. During that year, I developed symptoms of severe chronic pain. On some days, I couldn’t get off the couch. I had no idea what was wrong with me. I had gone from being relatively healthy to describing my body as that of a 90- year-old. My doctor ran multiple tests and they all came back negative. She ended up sending me to a teaching hospital to get a second opinion and I was finally diagnosed with Fibromyalgia.
Anyone who has experienced chronic pain can tell you that cognitive (thinking) problems and fatigue are parts of the package. I remember feeling so foggy headed at times that I was embarrassed by my inability to express myself effectively. It didn’t help that the fatigue could stop me in my tracks. I started looking for answers because I didn’t get any from the teaching hospital. Instead of giving me the magical cure that I wanted, they told me to just relax and spend time rocking on the porch. They further told me not to take any of the medications that were being advertised at the time because they would be bad for me at my age. I was just twenty-two.
Local doctors offered me pain pills. I was prescribed Vicodin, Hydrocodone, Lortab, Tramadol, and the list goes on. Being from a part of the country that has been ravaged by the opioid epidemic, I was very hesitant to go down that road. I took the pain medications very sparingly at first and ultimately decided to get rid of them. They only provided temporary relief and the side-effects were awful. Who knew opioids could make you itch like you had fleas?
I was at a cross roads, I knew I wanted to continue school and eventually become a psychologist, but I didn’t know if that was a feasible option anymore. The alternative was, I could stop living and give in to the pain. At that time, my personal narrative was that I was a good student that didn’t have to work all that hard and I could do grad school just like I did undergrad. Based on that narrative, I applied to grad school and the girl I had been a year ago got in.
Letting Go of One Story and Creating Another
I remember being so excited on the first day of grad school. I was pumped to meet the other students and get started. The first day went okay, but as time passed, I quickly started to get overwhelmed. I was drowning before I knew it. I was trying to perform at the capacity of a person who was not sick and it wasn’t working.
I was able to keep up with the assignments, but other areas slipped. I thought I didn’t deserve to be there. I remember sleeping every chance I could in those early days. If I was sleeping, I didn’t have to face reality. I had some friends but I didn’t let anyone in. I was so afraid of being stigmatized for having chronic pain, that I let myself get stigmatized as the lazy, aloof girl, who did the very least possible to get through.
I remember one day I was lying on my couch crying and out of nowhere the thought came to me, “You are not the person you once were and you can’t live up to that standard.” I’m pretty sure that thought was a gift from God, but at the time I wasn’t in a place to recognize that he was there for me. I had gotten away from him.
That day I started the process of changing my story. I decided that I was not going to be my worst enemy anymore. If others wanted to judge me, I would let them, but I was not going to judge myself. I decided that I was going to fight my illness with everything I had and I was going to live up to the highest standard I was capable of and that was going to be enough.
Changing Your Story Can Change Your Life
I would like to say after that day on my couch everything went smoothly for me, my self-esteem was restored, and grad school became easy, but you would spot that lie. Life is always going to be a little messy. I continued to struggle. I continued to experience self-doubt. The difference was my outlook had changed.
I researched Fibromyalgia and I found stories of people who made lifestyle changes and were able to live beyond their illness. I found stories of people who had built themselves up to the point they could run again and be active. I started challenging myself and looking for my limits. I wanted to start gently pushing past them to gain endurance. With the help of my heating pad, which was my best friend for a number of years, I made progress. I completed my master’s degree and applied and got into the doctoral program at my university.
Speaking at the FDA Public Meeting on fibromyalgia
Over time, I learned how to cope with my pain symptoms to the point that I could have several good days in a row without having a flareup. I was still dealing with chronic fatigue and brain fogginess, but I pushed through the best I could. One day I was at work doing the psychology version of clinicals, when I came across a call from the FDA. They were looking for patients who had experienced Fibromyalgia to tell their stories with the goal of creating better treatment options.
I typed up my story and sent it to them, not putting a lot of effort into it as I was busy that day. To my surprise, about a week later, they contacted me and invited me to speak. I ended up telling my story to an audience of over 10,000 people. I was grateful for the platform to speak on how I had decided to treat my illness utilizing life-style changes instead of medications.
Talking at that meeting impacted my life greatly in that it gave me a platform to be unapologetically myself in front of a large audience. I didn’t have to worry about stigma or people judging me as I was preaching to the choir so to speak. My talk was being heard by other pain patients, doctors, and scientists. The feedback I received helped to bolster my fledgling new story. People were surprised that I had been able to do grad school with the level of pain I was enduring. I heard comments about my perseverance and received real encouragement. I left that meeting more inspired than ever to complete my degree and find a way to use my story to help others.
Changing My Story Again
I spoke to the FDA six years ago. Since then, I completed my doctoral degree and became licensed as a psychologist in Virginia. I still have some level of pain everyday but most days it is a three or under on a pain scale. A couple years ago I was prescribed a shot for migraine headaches that had the side effect of making my chronic pain more manageable than it has ever been since it first started.
Three months ago, I married my best friend and we climbed Mt. LeConte, the tallest mountain in Tennessee’s Smokey Mountain State Park, on our honeymoon. Climbing that mountain was one of the hardest things I have done physically, but I didn’t have a pain flareup.
I give God all the credit for helping me get from where I was when I started to where I am now. He was there even when I was fighting him. Today, I’m sitting in my home office, drinking tea, and waiting for the laundry to cut off. It’s a lazy Sunday. I don’t have any projects or assignments due and I can relax more than I have ever been able to in recent years. I wouldn’t be here today, if I had not been willing to change my story and adapt.
Today, my story is not that of a fighter anymore. Thankfully, I don’t have to be in fight mode as much as I did previously. My new story is that of a motivator. I know first-hand what can happen if you allow your story to go stagnate. If I had chosen to wallow in self-pity because things no longer came as easy as they once did, I wouldn’t have the beautiful life I have now. Don’t get me wrong, my life isn’t rainbows and butterflies by any means, but it beats the alternative.
Do you need to change your story?
Are you feeling stuck? Has something happened to shake your confidence? If so, take a step back and look at yourself. What story are you living by? When did that story develop? Is your story still true? Do you need to change it? If you need to change it, there is no time like today to do so.