Living With An Invisible Condition
I want to talk about EDS
What is EDS? Ehler Danlos Syndrome (type 3) is something I’ve lived with my entire life. It’s an inherited condition that affects my connective tissue in my skin, tendons, ligaments, blood vessels, internal organs and bones. It’s not something I talk about often because it’s something that’s quite normal to me… I’ve never experienced life without it and it’s only been in my adult years that I’ve really understood how much it affects me as so many of my symptoms I had assumed were normal and things that everyone experiences. There’s not much information about EDS, most doctors aren’t taught about it in med school and it wasn’t until after many years of going through GPs, doctors and specialists that I was diagnosed (many people with EDS aren’t diagnosed or receive a diagnosis later in life).
I want to speak about it now because invisible conditions make it difficult for people living with the condition to be taken seriously and I want to share my experience living with an invisible condition to raise awareness for those who don’t know much about it and create a community for those who do. It’s important to remember that not everyone with EDS are the same, even if we have the same type. We’re all different and struggle with different symptoms are varying levels. This is my experience alone and I do not speak for anyone else with EDS, although many of our symptoms may overlap and manifest similarly.
I have many daily symptoms of EDS (which is part of why it’s difficult to diagnose), but the ones that affect me most obviously when I’m out in the world are:
chronic joint pain (I experience most of mine in my knees and hips)
chronic muscle pains (I experience most of mine in my lower and upper back)
loose joints that easily sublux or dislocate (mainly in my knees, hips and shoulders)
difficulty standing still for long periods of time (any longer than about 10 minutes triggers severe pains)
sudden, desperate urges to go to the toilet (incontinence)
chronic back and neck pain without supported seating
discomfort sitting in chairs (a position lower to the ground or where I can fold my legs is best)
soft skin that easily bruises and bleeds
These are just a few of my daily experiences that can sometimes make being in public places like concerts, festivals, bus stops, grocery stores, shopping centres, cinemas and anywhere that may mean standing still for periods of time, limit access to the bathroom or unsupported seating really challenging.
Oh, and I also have POTS (postural orthostatic tachycardia syndrome) which is associated with EDS, which is a condition that affects my blood vessels resulting in frequent lightheadedness, black outs, dizziness, trouble focusing and remembering things, shaking and trembling, chronic fatigue, headaches, nausea, poor sleep, chest pains and can result in fainting (although I’ve only experienced a full faint once, luckily).
I don’t tell you this for sympathy, in fact most people in my life are completely unaware that this is something I deal with (only telling those on a need-to-know basis). Hi to my friends if you’re reading this, by the way… surprise! I’m writing this post to show that you never know what someone else is experiencing. I often get disapproving looks or aggressive comments if I use the disabled bathroom, people aren’t always willing to give up their seat for me when I ask, reasonable adjustment isn’t always granted and people can be physically rough with me all because I look, on the surface, like I don’t have a disability.
So what do we do if we can’t tell who does and who doesn’t have a disability? The best thing is not to assume either way. Treat everyone with respect and foster a safe space for communication to open up about needs and preferences. Let’s end the stigma around what it means to live with a condition, visible or not, and help raise awareness by sharing our stories (if you feel called to do so) and uplifting and platforming those who are sharing theirs.