By Ed Coghlan.
Katie O’Leary has been a frequent contributor to the National Pain Report. Here is part one of an interview we did with her recently about her recent battles. You can read part two, here.
1. You have been diagnosed with CRPS…what’s that been like?
It has been a rollercoaster of emotion, sacrifices, failures and successes. Sometimes the failures are monumental or tiny, whereas the successes are small or overwhelmingly wonderful. The most important lesson I learned is that doctors are human and they don’t always have all the answers. While my CRPS was diagnosed within 6 months, the circumstances that caused it are actually quite unique. I had FAI. (Femoral acetabular impingement) basically my right femur was just a little too long and it rubbed against the ball joint of my hip and tore the cartilage. I had hip surgery to fix this, and it caused my CRPS. The original injury occurred because I was a college athlete and played Division I rugby for 4 years. Most women I know who have this are a lot older, have the disorder in their feet or arms, and they are married. I would say that has been the hardest part - dealing with this disorder without my family and without someone to lean on (no pun intended) has been emotionally taxing. And because my emotions and state of mind play into my illness, I have to try and stay calm - otherwise I could trigger my gag reflex (flare ups cause me to vomit and when I get emotional my pain increases) and then I end up in the hospital from dehydration. But because I have to rely on my own wits in the doctor’s office, I have become a stronger advocate and I articulate my needs with more confidence and intelligence. It may ruffle a few feathers, but my health is of the utmost importance to me, and if a doctor doesn’t like all the questions I’m asking - too bad! I will not be giving up. As I always say, my doctors may know best, but I know my body better.
2. As a former college athlete, you’ve attacked it with enthusiasm. What have been your best moments and your worst moments?
As a college athlete you are taught to fight as a team. You look to the people next to you and formulate a plan of action and you support each other. I think for me, my best moments have been the times I’ve been able to advocate for others with my writing and with my experiences. For example, I wrote an article about my negative experiences with TSA, I was invited to speak to the disability department at the TSA on the phone - and that was incredible.
My worst moments have been my own struggles with denial, anger, and anxiety. All three have hobbled me at one point or another. I have felt so much anger that at times it has been explosive and unhealthy. The pain is so overwhelming, and I feel so much shame and sadness that it affects my personality and mood, but I have learned over time that I have to stop comparing my illness to other people’s. I have a nerve pain disorder, and while I have family and friends with nerve issues, none of them can relate to what I’m going through. But I am finally learning to control that.
6. You are optimistic…despite being hospitalized et al, what is your feeling about the next phase of your life…
I am hoping I can return to working full time soon. I cannot put a date down or a specific time, but I am hopeful. Some days are better than others. What keeps me going is the promise I made myself, which was to live an extraordinary life and to follow my dreams. I believe I’m on the right track, and while this may be a harder race than most, I am limping my way around the field. I just hope I can make it past the finish line.
Part Two of our interview with Katie will run on Thursday (Aug 31). The National Pain Report is welcoming patient stories in September as part of Pain Awareness Month.