My struggle with disability has been life-long, but I only received a diagnosis about five years ago just after I decided to start on the actuarial career path. It is extremely difficult to figure out how to take exams with new or worsening disabilities. Heck, it’s extremely difficult for most actuarial students to figure out how to take exams under normal circumstances! To give you an idea of why it took so long to get a diagnosis and why I am still struggling with accommodations, I will take you through my journey to diagnosis.
Childhood
I do not remember a day when my body didn’t hurt. I was an active child, participating in dance classes, music lessons, musicals, playing outside, swimming…Yet I was always in pain. I broke my first foot in a swimming pool when I was 11. It was the beginning of chronic foot problems. I broke both of my feet one after the other when I was 14. Using crutches hurt my entire body despite the high amounts of Advil I was prescribed, but I rarely complained since my pain was usually dismissed by medical professionals. My doctor did order a bone density scan since it was a little weird that I had broken my feet three times, but it didn’t show anything interesting.
When I was 17, I badly injured my sacroiliac (SI) joints, pelvis, and hips doing shot put and discus. I was always the strongest girl in summer boot camp type classes, so the coach recruited me for track & field. I couldn’t run much because my feet still hurt from being broken several times throughout childhood despite the fact that they were fully healed. No one believed me that they still hurt. I kept asking why things still hurt if they had healed but there were no answers. Unfortunately, my track & field injuries and pain persisted throughout the rest of high school.
College
In college, I had academic scholarships for math, voice, and piano. I originally planned on obtaining a B.S. in Mathematics and a B.M in Music. I eventually chose Music Theory to combine my dual loves of math and music. However, my body seemed to be slowly falling apart and it made my college experience very difficult. My freshman year of college, I partially tore my left rotator cuff falling in a waterfall. Physical therapy was rough and it took a long time to heal. To make matters worse, my sophomore year of college, I broke another foot in an extracurricular dance class doing a triple pirouette. During this time, I studied two instruments (voice & piano), took an extra course load every semester, and did a lot more activities than most college students. By my senior year, I was exhausted and suffering from ocular migraines daily. The foot, pelvis, hip, and back pain still continued. I was also started having major problems digesting food.
Post-College Pre-Diagnosis
I continued having problems with various joints and pain after college. The chiropractor I had been seeing since I was 17 didn’t have any answers for me. I saw him as regularly as I could afford in an attempt to get my body to hold itself together. I kept asking why no one else had to get their entire spine realigned when they’d held music at a concert all weekend. I just wanted to be normal.
After I got married in 2011, I was singing almost every night, working three different jobs in different fields seven days a week, and exercising almost every day. I weight lifted, did spin class and a few boot camp style classes. My body hurt all the time. I was experiencing symptoms of adrenal fatigue. At least one day a week, my body would shut down and I would be unable to move for the better part of a day. I referred to it as “crashing.” I thought it was normal for my crazy schedule.
While working out, I dislocated both shoulders on more than one occasion. (Overhead press is my nemesis to this day!) My gastroenterologist figured out I had severe acid reflux that probably requires surgery, but the surgery is very invasive and will have to be repeated. To put it in perspective, I take 3-5 times the amount of acid reflux medication available in over-the-counter meds and it still doesn’t stop it. It takes me about half an hour to eat a meal because if I eat too quickly, I will puke it back up within minutes. I frequently regurgitate cold water that I drank a few minutes before. It’s always freaky though it is a regular occurrence.
Then in November 2014, I broke my foot. For the fifth time. And everything changed. My ankle had given out as I maneuvered around my living room and I heard my fourth metatarsal snap. I wore a giant walking cast on my left leg for 10 weeks. My hips were constantly out of alignment by 3” or more. Moving any part of my body was agony. Unfortunately, the break was in a bad spot, so it took a long time to heal. The ER nurse who put the temporary cast on me had never seen my type of bone break without an ankle injury to accompany it, yet my ankle was fine.
AH-HA!
Eventually, I was released from the boot, but had to get custom-made orthotics. The woman who measured me for them asked me when I had been diagnosed with Ehlers-Danlos Syndrome (EDS). I said, “What’s that?” She made me write it down and look it up. (https://www.ehlers-danlos.com/what-is-eds/ is a great explanation for those who are curious.) She couldn’t believe no one had ever looked into that for me. She said my body moved like someone with EDS. My joints being so flexible wasn’t normal and neither was my pain. Because of her, my sister found a cardiologist specializing in EDS was diagnosed with hypermobile EDS (hEDS) and a serious heart condition. I was diagnosed with hEDS soon after. It was the biggest “AH-HA” moment of my life. Everything finally made sense: the unstable joints, chronic pain, digestive issues, random allergies, subluxations… And now I could tackle most of it head on!
Post-Diagnosis
After the bone in my foot had healed, my body was a mess. I started doing Pilates to get my body back in June 2015. Because I didn’t have enough going on, this is when I decided I wanted to change career paths and take actuarial exams. I passed two of them when disaster struck again. I slowly lost the ability to feel and use my hands regularly. I could hardly take notes or do exam problems. I finally saw a specialist in December 2015. By January 2016, I learned that I had to have surgery on both wrists and elbows in order to have a chance to use my arms normally again. The nerves in my wrists were dying and the ones in my elbows were headed in that direction. Unfortunately, I realized that I could not continue in the exam process while I dealt with my health, so everything was put on pause for about a year.
Management
The EDS online community is incredibly active. They have been a huge resource for me as I try to figure out how to cope with the ever-changing issues my connective tissues cause. There are some wonderful Facebook groups offering life hacks, study tips, athletic advice, different body supports, and more. I’ve also been fortunate enough to attend two EDS Learning Conferences where I’ve been able to learn from experts in the field about my own body, meet vendors who carry products that can help me, and meet others like me. EDS is not well understood by most of the medical community. I struggled to get diagnosed in St. Louis because most doctors refuse to diagnose it or will only treat it once you have a diagnosis. I’ve had to figure a lot out on my own.
Currently, I have the use of my hands for about a tenth of the time that “normal” people do if I’m writing continuously. I wear braces on my right thumb and index finger to keep my joints from popping out or bending the wrong way as I write. Despite these, as I write, I get shooting pains from where my thumb and wrist meet all the way up into my neck and jaw. It gets worse the longer I write. Eventually, my hand and wrist get so swollen, I have to take a break. It can take days for the swelling and pain to go down, despite efforts to quell it. If I push through the pain, I end up with a severe tension headache that can mimic a migraine for as long as it takes for my body to go back to “normal,” which may require assistance from my chiropractor and/or massage therapist.
At work, I predominantly use the computer with pillow supports for my wrists. I’m slowly switching my study methods to be more computer-based so I can study for longer with less pain. I also struggle with brain fog due to pain, chronic headaches, and ADHD, which can make regular activities and studying a challenge. At the moment, I’m able to manage pain with over-the-counter treatment options, but I struggle most first thing in the morning and before bed. Staying in one position for too long is very painful for me, because my body believes the new position is permanent and my connective tissues pull my muscles and joints into the new shape. I’m basically that weird homemade silly putty that eventually assumes the shape of its container. Fidgeting and moving around constantly helps keep my body from reforming itself, but its inevitable most of the time. I’m a real treat to have in an exam room!
Stress is a huge trigger for most of my EDS symptoms, so exams are particularly difficult. I’ve found lots of ways to manage though! I exercise regularly, meal plan, get massages, take hot baths, ask for help, schedule downtime, plan to sleep more, practice self-care, and most importantly, I listen to my body and do what it needs me to do within reason. Though my progress is slow, I will make it through the CAS exam process. I may add accommodations as I go to make my experience more like the “normal” candidates, but that’s precisely what accommodations are meant to do. I am currently searching for a local doctor who specializes in hEDS. Unfortunately, I may need to travel to a different state to get the supportive care and documentation that I need for various accommodations. Of course, this has been complicated by COVID-19. I’m focused on staying home and staying healthy!
What are your studying and exam day tips and tricks? How do you manage your disability around exam time?