I don’t know how to make the world understand what it’s like to live with longterm illness. To wake up each day never knowing if you’ll be ok, to have your dreams and plans constantly disrupted. What it’s like to never feel rested and to always be in pain

I have EDS. 79.5% of people with Ehlers-Danlos have significant fatigue (Anne Krahe, 2017, Systemic Manifestations and Health- Related Quality of Life in Joint Hypermobility Syndrome/Ehlers- Danlos Syndrome-Hypermobility Type)

“Chronic pain has been documented to affect up to 100% of individuals with a diagnosis of JHS/EDS-HT, while 85.7% report experiencing progressively worsening pain.” (Ibid.)

I am just...so sorry for all the people who survive COVID-19 trying to find condition management that doesn’t exist or is unaffordable. I’m so angry at all the hooks and lures set out by shills and charlatans that’ll cause so much iatrogenic harm

I want you to know that you won’t be the same person after you become chronically ill. It changes you and forces you to find new ways to live. Embrace that transition but know it’s ok to grieve for what you’ve lost