Imagine going through life dealing with an illness that is invisible to everyone but yourself? That’s the reality of Marcia Brock and Cassandra A. Campbell who shed light on their experiences of living with invisible disabilities through their new autobiographical book, BrOKen.
Cassandra A. Campbell lives with a number of debilitating health issues including Ehlers Danos Syndrome (EDS), described by NHS.co.uk as a group of rare inherited conditions that affect connective tissue, and Fibromyalgia, a chronic condition that causes pain all over the body. Marcia Brock also has EDS, Raynaud’s, Lupus and has survived cancer several times.
Hugely inspirational, the ladies created their EDS_Unplugged platform, delivering workshops and educational talks alongside the UK EDS charity ehlers-danlos.org and penning BrOKen, their autobiographical book to empower others who live with various chronic health issues to still stand strong.
View this post on Instagram
#pimpmycrutches was our launch video into #lifewitheds . We have shared a #trueview of how our lives have been affected by living with a #chroniccondition . Most of the time we have a good laugh when we’re together, so we show the bloopers and laughter too. #seelinkinbio #edsunplugged
Outside of their illnesses, both ladies lead busy, fulfilling lives. Marcia became the UK’s youngest female Microsoft engineer and followed that with becoming the first Black woman to gain the Cisco Wireless Networking qualification. In a career that spans 20+ years, she has won awards and is a well-regarded IT and community specialist.
Cassandra is an “empowerment specialist”. She is a mentor and life coach with an online programme that supports people living with chronic illnesses. Studies in counselling and coaching, prayer and meditation were important components of her growth to combat the mental, emotional and physical trauma she experienced as a result of her illnesses. She uses these skills to support her clients.
For many of us, the idea of living with debilitating illnesses is unimaginable, compound this by the symptoms being “invisible” and we begin to marvel at the strength and determination of these ladies as they deal with these chronic conditions.
Both Marcia and Cassandra are extremely passionate about raising awareness and understanding about living with EDS and other chronic conditions. We leave you with an introduction from their book in which they describe living with their conditions, in their own words.
BrOKen, Living with EDS and other Chronic Illnesses – introduction
“I’m going to be okay” or “I’m fine” is often what we say when people ask how we are, even though we probably aren’t. How can we really be fine when we live with pain every single day…?
Broken but OK. That has been our lives for a very long time.
Sometimes it’s easier to sat that, because most people just don’t get it!
Many illnesses and disabilities are invisible, but when it’s also rarely heard of – even by medical professionals – or remain undiagnosed, the battle can multiply tenfold.
Holding ourselves together by a string, we battle through each day like warriors, unable to show the rest of the world what our body and mind really feel like.
Our story focuses on some of the challenges we’ve faced living with chronic illnesses, from our first recollections of consistent pain as children to how we’ve managed to overcome those challenges to become the women we are today.
With a touch of humour and a whole lot of truth, we hope our story encourages others living with chronic illnesses to not only be able to identify with our experiences, but also to realise that they, too, can overcome the challenges preventing them from living a fulfilled life.
Buy BrOKen, Living with EDS and other Chronic Illnesses here.