Managing Chronic Pain During Summer Activities – Marissa's Advice

Meet Marissa

Meet Marissa, a Care+Wear community member and a resilient chronic illness warrior living with Ehlers-Danlos Syndrome (EDS) and other chronic conditions. For Marissa, summer can be especially challenging due to chronic pain and the complexities of managing EDS. In this blog, she opens up about her journey with EDS, offering valuable insights into how she navigates the summer months while managing her symptoms.

Continue reading to learn more about Marissa’s inspiring story and the strategies she uses to maintain comfort and balance during the warmer season.

My Journey to an EDS Diagnosis

I was diagnosed with Ehlers-Danlos Syndrome (EDS) at the age of 21, but the path to my diagnosis was far from easy. For nearly a decade, I experienced gaslighting from professionals who dismissed my symptoms. Throughout my life, I dealt with a myriad of seemingly random issues: distinctive blue sclera, frequent joint braces, and an increasing amount of pain and instability as I grew older. Additionally, I developed Postural Orthostatic Tachycardia Syndrome (POTS) and gastrointestinal issues. It became impossible to ignore the feeling that something was "different" or "wrong" with me.

Taking Control of My Health

Determined to avoid further gaslighting, I immersed myself in extensive research about my symptoms. I vividly remember the summer day when my efforts paid off. I stumbled upon information about Ehlers-Danlos Syndrome and immediately knew it fit my experiences. The next step was finding a geneticist, but local options for EDS diagnosis were scarce. Seven months after my discovery, I traveled four hours to see a geneticist, who confirmed my suspicion and diagnosed me with Hypermobile Ehlers-Danlos Syndrome (hEDS). It was a bittersweet moment, finally having a name for my condition.

Overcoming Accessibility Challenges at a Summer Festival

A few summers ago, I hoped to attend a local festival, but accessibility concerns and the heat made it seem impossible. I needed my wheelchair, but it wasn’t an option for the festival terrain. Upon arrival, we inquired about alternatives and were offered a golf cart ride. I brought my noise-canceling headphones and cane for transitioning from the golf cart, while my mom carried ice packs and knee/wrist braces just in case. Being prepared allowed me to enjoy the evening, and the assistance from others made it a memorable experience.

Essential Items for Summer Travel with EDS

1. Comfortable Clothing: Ensuring comfort through adaptive clothing like the Chest Port Access Shirt is always a must for any trip.
2. Braces and Supports: Essential items include knee, wrist, and neck braces that I frequently use.
3. Pain Management Tools: I pack my prescriptions, CBD, heating pad, weighted blanket, and TENS unit because you never know what you might need.

Traveling and participating in activities with EDS can be challenging, but with the right preparation and support, it’s possible to enjoy the experiences that matter most.

Follow Marissa on Instagram to learn more about her journey.