‘When you see me in a handicapped parking spot, you roll your eyes. My husband explains, ‘She doesn’t get better from this. She ultimately dies from it.’: Woman with multiple chronic illnesses urges ‘not all disabilities are visible’

“When you see me in a handicapped parking spot, you might glare. You may even be like those who have said something rude or left a nasty note on my windshield. I sport titanium rods and screws that go from the base of my head to my mid-back. You wouldn’t know by looking at me I have a terminal illness.”

‘This is clearly a case of anorexia. You’re a teenage ballerina refusing food.’: Woman with MALS is misdiagnosed for 20 years, ‘I was now convinced. They were doctors. They had to be right, right?’

“For as long as I can remember, I’ve been nauseous. I had lost 40 pounds. I started to find that the harder I worked, the more stamina I lost. The weaker I got. My body would physically swell. Then the horribly loud and embarrassing belching developed. ‘I really don’t think you need these tests. I believe your symptoms are psychosomatic.’ The doctors all told me it was anxiety. It was ‘in my head’ and I needed to ‘push past it and challenge myself.’ I would remain misdiagnosed, dismissed, and passed off, for another full year.”

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