Thea Smuckler, 29, has suffered thousands of dislocations over her lifetime, occurring up to five times a day, and affected nearly her entire body.
The woman’s symptoms manifested during childhood, with the woman from Goshen, New York, USA, regularly having to wear casts to help her heal.
She was less than two years old when doctors first had to pop her shoulders back into place, but her unusual ailments were believed to be because she was “lanky” and “clumsy”.
Over the years the frequency of her dislocations has increased, and her exhaustion intensified. Everything from chewing to walking down the stairs and carrying groceries can cause her joints to misalign.
Ms Smuckler was diagnosed with depression to dehydration and prescribed countless medications and yoga without any improvement.
“I felt like I was crazy and a hypochondriac. I felt ashamed of how much I was struggling that I tried to hide it. I felt pathetic and useless,” she said.
“Some days I have gone all day without eating because I dreaded dislocating while going downstairs. If I chew something tough my jaw will dislocate and get stuck, it swells up, is very ugly and painful.
“Walking down the stairs I can guarantee one of my ankles will dislocate and get stuck. It hurts and I have to painfully force the joint back into place. Then half the time it pops out again a few seconds later.”
She feared going to see a doctor, even when her jaw was locked shut or she had fainted randomly, as all bloodwork and ECGs came back normal.
Diagnosis after thousands of dislocations
“From every test I had, I was forever told everything was fine, and that it was depression that left me feeling so exhausted,” Ms Smuckler said.
“I felt like I was a useless human being because everything others found so easy would take a lot of willpower and discipline for me to accomplish.
Doctors have since diagnosed the woman with Ehlers-Danlos Syndrome (EDS). The disorder affects the connective tissues that support skin, bones, blood vessels and more, meaning that the slightest movement can cause her to dislocate.
Alongside her EDS diagnosis, she is suspected to suffer from Postural Orthostatic Tachycardia Syndrome (POTS) another invisible illness. The combined disorders mean she battles chronic fatigue and breathing difficulties.
The nurse is now “relieved” to have a diagnosis for the invisible illnesses after all these years and wants to raise awareness of EDS, in the hope that others who recognise similar symptoms can get a quicker diagnosis.
“I am very embarrassed to ask for help at the store or anywhere because I look so healthy,” Ms Smuckler said.
“I hope that one day I can overcome the feelings of shame associated with being young and disabled.”