Imagine being turned away from doctors when they learn of your medical diagnosis.
Imagine being told you would be better off having cancer.
Imagine having a well respected neurologist Google your condition in front of you.
Imagine not one, but several doctors recommending an amputation without fully understanding the underlying issue.
Unfortunately, these are just a few of the things I have faced after being diagnosed with Complex Regional Pain Syndrome (CRPS), the most painful condition known to modern medicine. On the McGill Pain Scale, CRPS is a 47 out of 50. The pain is relentless and ranks higher than cancer pain, childbirth, and even amputation, and there is no treatment or cure.
On September 5, 2005, the first week of my senior year of high school, my life changed forever after spraining my ankle playing volleyball. After extensive testing, I was diagnosed with CRPS in my right leg which has now spread to both arms.
In CRPS the pain signal is never shut off after the initial injury heals, and eventually the continued immune response ends up damaging the nerves.
I quickly learned that living with CRPS involved more than just pain.
CRPS has many comorbidities such as gastroparesis, osteoporosis, and postural orthostatic tachycardia syndrome (POTS) which causes fainting, and more.
Gone were the days of playing sports, something I had grown up doing. It was difficult to adjust to life on the sidelines. I did not know it at the time, but this was just the tip of the iceberg when it came to the changes that would need to be made to adapt to life with CRPS.
I have faced much adversity over the past 19 years with CRPS. It came at a crucial time in my life. I should have been excited about senior year, graduation, and picking a college, but instead, I was consumed with countless appointments.
As a high school junior, I received a generous scholarship to an engineering school. I loved what the school had to offer, but when I returned for my second visit after being injured I realized how inaccessible the school was.
I then felt lost thinking about where I would go to college. My volleyball coach knew I was struggling to find the right place. He was taking courses at Sacred Heart University and told me all of the classes were in one building. I fell in love with the campus, but more importantly, the community. I also knew that this was a campus that would not only be accommodating but would truly help me thrive.
School breaks consisted of procedures/surgeries so I would not miss class. I earned two Bachelor’s Degrees, three Minors, and a Master’s Degree. I went on to work at Yale School of Medicine doing research on cancer and Alzheimer’s disease.
Coming back to SHU as an adjunct professor has been amazing and once again, I was welcomed with open arms.
CRPS is an invisible illness making it difficult for others to understand. I wish people understood that every day is a battle between what I can physically do and what I wish I could do. After my diagnosis, I lost a lot of friends who did not understand that I could not keep up with everyone as I once could due to the constant, excruciating pain.
I am reminded of my CRPS 24/7. It’s unfathomable that such a horrible condition exists.
Sadly it is nicknamed the suicide disease because many patients see that as their only option to escape the pain. I have advocated on Capitol Hill to make changes to better educate physicians and change policy when it comes to prescription pain medications because a quicker diagnosis leads to a better prognosis and better pain control reduces the risk of suicide.
I have received proclamations from the mayor, a member of the CT General Assembly, and the Governor declaring November as NERVEmber and the first Monday of the month as Color the World Orange Day for CRPS Awareness the past four years.
People don’t see how much effort I put into every single task because I always put on a smile and try to be present and enjoy the moment.
Through it all I persevere. I have accepted that I am going to have good days and bad days. I am appreciative of those that have stayed through the good and the bad, sticking with me through it all. I know the bad days will pass, and I have a group of amazing people who are waiting there to support me! I am chair of the Annual Virtual CRPS Awareness Walks, and this year alone I had over 100 family and friends show up to support me, and this wonderful support system never lets me face these obstacles alone.
If you are interested in learning more, you can follow me and my service dog, Gunner, on Instagram and TikTok (@gunner_the_golden_boy), Facebook, and YouTube.
