Have you ever met someone who seemed too flexible? Someone who could contort their body into seemingly impossible positions without any apparent effort? If so, you might have encountered someone with hypermobility. For years, I was one of those people, unaware of the underlying condition that was causing my chronic pain and unusual physical traits.
A Lifetime of Misunderstandings
Growing up, I was often labeled as clumsy or accident-prone. I frequently bumped into things (like people or walls), tripped over my own feet (skills!), and experienced inexplicable pain. I remember going to the doctors and telling them I hurt, but when they asked where specifically, all I could say was “everywhere.” Doctors dismissed my concerns, attributing my symptoms to growing pains to “growing too fast.” Little did they know, I was grappling with a complex medical condition known as Hypermobile Spectrum Disorder (HSD), a related condition to Ehlers-Danlos Syndrome.
HSD affects the body’s connective tissues, making them more stretchy and less stable. This can lead to a wide range of symptoms, including joint hypermobility, chronic pain, fatigue, and digestive issues. For me, HSD has manifested in several ways:
- Joint Subluxations and Dislocations: My joints frequently slip out of place, causing pain and instability.
- Neuropathy: Nerve damage that leads to numbness, tingling, and weakness.
- Dysautonomia: A disorder of the autonomic nervous system that affects heart rate, blood pressure, and digestion.
- ADHD: Difficulty with focus, attention, and impulsivity.
- Brain Fog: Mental fogginess and difficulty with cognitive tasks.
- Mast Cell Activation Syndrome (MCAS): A condition that causes allergic reactions and inflammation.
- Fatigue: Persistent tiredness and exhaustion.
- Cysts: Fluid-filled sacs that can form anywhere in the body.
- Unusual Scarring: Scar tissue that is often wide, red, and raised.
A Late Diagnosis, a New Understanding
It wasn’t until I was 30 years old that I finally received a diagnosis of HSD. This late diagnosis was a bittersweet moment. It was the most validating doctor’s appointment of my life! It provided much-needed answers and it also revealed the challenges I dealt with due to a lack of understanding from doctors.
Living with HSD is an ongoing endeavor. I’ve had to learn to manage my symptoms, adapt to my limitations, and advocate for myself in the medical system. Despite the challenges, I’ve found some help in connecting with other people who understand what it’s like to live with a chronic illness.
If you or someone you know is experiencing similar symptoms, I encourage you to talk to your doctor. The Ehlers-Danlos Society is a wonderful resource to educate yourself and refer your doctor so they can become HSD/EDS aware. Seek out others, because support is needed with a diagnosis like this!
