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Hello from the Autistic Professor... can anyone relate?
I’ve had hypermobile joints since birth, which have profoundly affected my quality of life. On my medical chart, it just states, “hypermobile joints”. The instability in multiple joints—especially my knees, ankles, hips, shoulders, and toes—has led to frequent subluxations, repeated falls, and injuries from a young age. I’ve even experienced a full dislocation. Over time, I’ve come to believe that this joint hypermobility is most consistent with Hypermobile Ehlers-Danlos Syndrome (hEDS), due to the severity and longevity of my symptoms. These include chronic instability, easy bruising, persistent joint clicking, and episodes of dizziness that are difficult to explain otherwise.
At age 18, I was diagnosed with osteoarthritis, which validated part of my experience but not the full picture. Over the years, I’ve also developed what I strongly believe is fibromyalgia to explain the constant, widespread pain I’ve lived with since elementary school. This pain affects both joints and muscles, often persisting even at rest, and it has followed me into every stage of life. I’ve never had a truly pain-free day since adolescence. The fatigue I experience is profound and unrelenting, not something that improves with rest or sleep.
Alongside the chronic pain and joint issues, I’ve dealt with substantial digestive problems for most of my life. Despite testing, no clear gastrointestinal diagnosis has been found, which only adds to the daily discomfort. I also experience long-term jaw pain, frequent headaches, and occasional migraines—even when I’m well-hydrated and attentive to my health.
The physical toll of these overlapping conditions is immense, but so is the emotional burden. My symptoms can consume my thoughts and energy, making it hard to focus or function in everyday life without becoming overwhelmed. Mental fatigue from constant pain and vigilance over my body’s limitations is a regular challenge.
Due to the nature of my work, I have a deeper understanding of chronic illness and disability, which has made me more aware of how these conditions manifest—and how often they are misunderstood. Unfortunately, I’ve also experienced significant belittling and dismissal from medical professionals over the years. This has led me to downplay my struggles, mask my pain, and internalize self-doubt, all of which have caused me real mental distress. It’s difficult to advocate for yourself when your suffering is constantly minimized or questioned.
I’ve spent much of my life trying to function “normally” in a body that simply doesn’t cooperate, and I’ve learned the hard way how complex, invisible, and isolating chronic illness can be.
#EhlersDanlosSyndrome #ChronicPain #ChronicFatigue #ChronicIllness
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