July 9, 2022
What is EDS or HEDS?
Welcome to Dr. Brainerd’s B.R.E.A.T.H.S. Saturday’s Health Edition. This space is for me to discuss my journey with my full body genetic disability, Ehlers Danlos Syndrome (EDS) type 3-hypermobility (HEDS). My body has a connective tissue disorder making me super stretchy and fragile. With hEDS diagnosis, I feel chronic pain in my upper back, my knees and ankles give out when walking or standing long, my hips shoulders sublux at night when I sleep causing me to toss and turn, and I am very clumsy by falling and dropping things often. Because of constant fear of falling or causing myself more pain by doing any sort of activity, I also deal with a few mental health disorders. Here I will discuss the process I took to learn about my disorders, gaining validation from my doctors, the process of applying for disability, and the strategies I use to continue advocating for myself in order to manage a healthy and happy lifestyle aside from the complications from the hEDS.
What Prompted Me to Start Searching for a Disability?
About a decade ago, I had a sports injury on my right leg that tore my muscle, bled internally, and it turned into a huge knot. Doctors could not understand how my muscle got injured like that. For about a year, I could barely walk and sought out expert advice from several different doctors with no luck at treatment. This is what sparked something in me to find an answer. In the meantime, I wore knee braces, carried ibuprofen with me, and started reading about rare diseases.
How Did I Find Out About EDS?
I switched doctors, insurance plans, and kept looking for an answer to my rare injury. Five years later, my best friend from California, was coming home for the holidays after her first semester in grad school at Penn State in Pennsylvania. Her doctors there were testing her for a bunch of things and EDS was one of the disabilities, although she had never heard about it, she searched for what it was.
I Have Every hEDS Symptom!
We met for dinner and she began to tell me all the symptoms of hEDS (stating that it seems like I have every single one, and she was correct): sensitive skin, sensitive to hot/cold climates, easily bruises, hypermobility/falls often, easily cracking joints/pain, chronic fatigue, dislocations, subluxations, and bone fractures. HEDS explained EVERY injury in my life, including the rare muscle stretch/tear a few years back. I was so happy and grateful to finally know the name of my disability and I can now start to learn about it and be more proactive with my health.
You know you have hEDS when you roll more joints than Snoop Dog, that’s ankle joints, not medical Mary Jane!
Learning About EDS and hEDS
I researched EDS and typed up a report for my primary care physician and presented it to him in January 2017. The report had all the doctors I would need to see to determine the type of EDS, there are 13 types, all but one type show up on a DNA test. Type-3 Hypermobility, the most common type and the one I have, is the one that requires a physical diagnosis and will not show up on the DNA data.
Bad News vs Good News
April 2017, the first doctor I saw was a rheumatologist where they performed the physical examination using a checklist, assessing my arachnodactyly appendages with The Beighton Scoring System, and officially diagnosed me with EDS Type-3 hypermobility (hEDS). They said there is good news and bad news to this diagnosis. The bad news is that it is genetic (can be passed on), long term, degenerative (will get worse over time), no cure for it at the moment, and I should not do ANY sports (not even jogging, weight lifting, circuit training, yoga, pilates, or marathons). The good news is that there are several medical treatments I can try to maintain the best possible health: physical therapy for too much range of motion, massages, water aerobics or swimming, foam roller exercises for myofascial release therapy, resistance band exercises, motor scooter, shoe inserts, and body braces. To me, this was all good news because I finally know exactly how to advocate for my own health.
Advocating for My Own Health
At the time, I was teaching in Los Angeles and I asked several elder teachers about disability leave since some of them have used it for chronic disabilities or long-term medical leaves. Next, I called the human resources department and asked for the correct paperwork to start the disability filing process, FMLA, and medical resources. I am not going to lie, the paperwork filing process is daunting, especially when it starts to go through the state. It takes several months and a lot of patience, but as the only one advocating for my health, I made sure it was a priority.
Time To Heal
In Summer 2018, my disability was approved by the state and I could get monthly income from my school retirement account. The income is paid once a month and half of what I used to take home, which I am very grateful and blessed to have. However, I had to make huge adjustments, minimalize my material possessions, and move in with my family part-time to be able stretch the money a bit further until I could get back on my feet. Since then, I have used the time to heal mentally, physically, and emotionally.
Let me tell you, time off work to heal gave me lots of other options to explore. More than likely, I will never be able to go back to physically teaching multi-subjects in a traditional classroom as my body would not be able to function properly in that setting. That doesn’t mean I can’t ever teach again! I have been going to school to study online teaching for the last twenty years, pretty much preparing for what happened to education around the world in 2020. The timing was impeccable, I graduated with my doctorate in educational technology and leadership, defended my oral dissertation (on distance learning) through Zoom, and proceeded to start my own educational nonprofit, Global Alternative Learning Systems.
Educator to Entrepreneur to Super-heroine
Teaching my entire life and never attending business school prompted me to start researching how to be an entrepreneur. In 2020, I signed up for female entrepreneur groups, read and listened to hundreds of books on marketing strategies, funnels, launches, networking, making money, and starting a nonprofit business. In 2021, I started taking mastermind courses, joined a writer’s community, and began blogging with the Ultimate Blog Challenge. Now in 2022, I am taking more steps to move forward with my new career as a solo female entrepreneur and acting like Super Woman juggling multiple business, attending a few courses on email lists and blog content, signing up for a money bootcamp, applying for nonprofit solicitation, writing and applying for grants for my nonprofit to start raising funds so that we can begin hiring people to create our platform, and learning how to use social media to leverage my brand.
Thank you for taking the time to read about my hEDS journey and how it has helped me stretch myself further than I ever expected (pun intended, lol). I am happy to share this information as it may help others with discovering their own disabilities, advocating for their own health, taking time off to heal, maintaining proper care and finding new ways to reinvent themselves. To me, hEDS is not a disability, but an extra ability, a super power, the thing that got me to examine my lifestyle and really take into account what matters most, to live a happy and healthy life.
Sending lots of love and gratitude,
Dr. Jaime Brainerd, E.d.D.