Building each other up: Why we need community
Over the years I have been involved in a wide range of communities, from school to university, Guiding/Scouting Movements, church, and sports (ha, that was a while ago!). And while they all [...]
In Adults, Ehlers-Danlos Syndrome, Hypermobility Information, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome, Loeys-Dietz Syndrome, Marfan Syndrome
Posted The Burger Joint
Ever been to a burger joint? Ever hear of joint hypermobility? What on earth do the two have in common? Joint hypermobility is the presence of a larger than expected range of movement at a given [...]
In Adapting, Chronic Illness, Disability, Emotional Impacts, Grief, Identity, Independence, Mental Health, Pacing
Posted Hypermobility: The condition that takes away…
Hypermobility is a stealer. It steals so much from those who live with it, making it feel like the label should more appropriately be “Hypermobility: The condition that takes away more than [...]
In Adapting, Adults, Disability, Emotional Impacts, Mindfulness, Pacing, Pain Management, Psychology & Counselling, Therapy Options
Posted 4 keys to hypermobility pain management
I’m sorry to hear that you, or your child, are experiencing so much pain. Pain is a big problem for a lot of people with hypermobility conditions, so please know that you are not alone in this [...]
Are your clothes out to get you?
First of all – you’re valid, and you’re awesome. No matter how you dress or whether you even care about fashion or not. But sometimes part of our self-care might be allowing [...]
The reality of a flare-up: Living with EDS & Dysautonomia
Recently I had a terrible flare up, and someone asked me “what exactly does that feel like? How was a flare-up different from the usual pain of my Ehlers-Danlos Syndrome & [...]
8 Tips for planning a solo day out, like a boss!
I went to my very first pride march this weekend! It took some epic planning, but I learned a lot from this and wanted to share with you my 8 tips for planning a solo day out, like a boss! [...]
By Liz Harvie
In Adults, Anxiety, Chronic Illness, Emotional Impacts, Grief, Identity, Pacing, Psychology & Counselling, Thought Management
Posted Finally getting a diagnosis
Relief. Reassurance. Validation. Shock. Denial. Anger. Grief. Acceptance. Peace. Self-respect. These emotions all stem from finally getting a diagnosis. I’m 44 and live in the UK. I [...]
Dear Ehlers-Danlos Syndrome
Dear Ehlers-Danlos Syndrome, I thought you had me. I really did. You gradually crept uninvited into my life, OUR lives. You took up my time, my energy, and hid from all my doctors. You made them [...]
In Ehlers-Danlos Syndrome, Hypermobility Information, Hypermobility Spectrum Disorders, Joint Hypermobility Syndrome
Posted HSD, JHS, hEDS… oh my!
There is so much confusion in our community about hypermobility diagnoses following the release of new criteria in March 2017. Is it HSD, JHS, hEDS… which is it? Here’s a little [...]