Story · 2 min read · 24 Jan 2023
Alysha’s pain story
Find out how Alysha has developed strategies to manage her chronic health conditions and the associated impact of pain and fatigue on her mental wellbeing.
By Prof Helen Slater
By Prof Helen Slater
Alysha has experienced pain since she was 11 years old. Her pain started with juvenile idiopathic osteoporosis. That meant she experienced a lot of broken bones and bone pain.
Alysha experienced other health conditions including chronic fatigue, postural orthostatic tachycardia syndrome (POTS), fibromyalgia (Chronic Widespread Pain) and some other things.
She was finally diagnosed with a connective tissue disorder, called Ehlers Danlos syndrome, (associated with Joint Hypermobility Pain). This syndrome affects both her internal organs and her musculoskeletal system.
Alysha describes the impact of pain on her overall wellbeing: “…feeling pain, the fatigue, the mental strain…mental health has been a big factor for me. While it started as a physical thing, it has moved into a mental side as well.”
“It’s normal to feel depressed and anxiety after you get a diagnosis and your entire life changes.”
Alysha
She describes the two-way street between pain and mental health: “They are so interconnected, if your mental health is deteriorating and you’re not looking after that, the pain and fatigue can cause a cyclic effect.”
Alysha talks about validation and the importance of having “…your own voice in your own treatment from whatever age you start at…feeling, making sure they feel involved, making sure they feel heard.”
“I think validation’s really important…the validation of you’ve got chronic pain…whether they’re visible or not…just acknowledging that patient, that person is going through this and experiencing these things going what your experiences are real, they’re real to you and that’s what we should be looking at.”
Hear why sharing her experience with other young people experiencing pain and advocating for their care, is so important to Alysha. “For me, my future’s always been about helping others. It’s always been about sharing my experiences.”