Hello! TJ here from The Gibbons House! Welcome back to the blog, or if you are new, it's great to meet you (virtually!).
I have been diagnosed with Joint Hypermobility Syndrome (now known as Hypermobility Spectrum Disorder, or HSD). I am in the process of being diagnosed with ADHD, and I already have a diagnosis for Dyslexia and Dyspraxia which are learning disorders. If you want to read more about my diagnosis journeys, you can! Here is the one on HSD, and this one is about neurodiverse.
Over the past 12 months, I have began to wonder if there is a connection between HSD and being diagnosed with a neurodivergent condition, and in true ADHD fashion, I hyper-focused on it for a while.
In this post, I’ll share everything I’ve learned, along with my personal experiences related to both conditions. I’ll start by briefly explaining what neurodivergence is, then move on to HSD. After that, I’ll explore the links between them and what that connection might mean for those diagnosed with both.
Disclaimer: I am not a medical professional, this is only information I have pulled from external sources which will be referenced, and my own personal experience.
What is neurodivergence?
Neurodivergence is an umbrella term that encompasses a variety of neurological variations in the human brain. In contrast to those who are neurodivergent, individuals classified as neurotypical exhibit the more common patterns of thinking, learning, and processing information. Neurodivergent brains operate differently from the typical brain, showcasing a unique set of cognitive functions and perspectives.
It is a common misconception that individuals with neurodivergent brains are "broken" or that their cognitive processes are faulty. This is far from the truth; neurodivergent brains simply function in alternative ways. These differences are not deficiencies but rather variations that enrich the tapestry of human experience.
Conditions that fall under the neurodivergent umbrella include, but are not limited to, ADHD, Autism, Dyslexia, Dyspraxia, Dyscalculia, Tourette syndrome, OCD, Bipolar disorder, and Borderline Personality Disorder. Each of these diagnoses presents a diverse range of symptoms and challenges, varying significantly in their impact on individuals’ lives.
While there are certainly challenges faced by those with neurodivergent brains, it is essential to recognize the strengths and positives that these differences can bring, both for the individuals themselves and for those around them. Neurodivergent individuals often possess unique ways of thinking and perceiving the world, which can lead to innovative ideas and solutions that might not have been considered otherwise. Their distinctive viewpoints allow them to contribute to society in meaningful ways, enriching the realms of beauty, art, and creativity with fresh perspectives and original expressions that may not have emerged from neurotypical thought processes.
What is Hypermobility Spectrum Disorder (HSD)?
HSD, or Hypermobility Spectrum Disorder, is another umbrella term that covers various diagnoses related to hypermobility, whether that’s Hypermobile Ehlers-Danlos Syndrome (hEDS), Symptomatic Hypermobility, or other related conditions.
These disorders involve connective tissues and how they impact collagen in the body. Collagen is a crucial protein that helps maintain the structure and strength of our skin, joints, and other tissues. When collagen is affected, it can lead to issues with how our bodies are structured and how stable they are, as well as how well our organs function. Essentially, this can interfere with the different systems that keep everything running smoothly.
Hypermobility itself refers to the ability of joints to move beyond the normal range of motion. While some people may have hypermobile joints without any associated problems, others may experience significant challenges. Since HSD is a spectrum, each person with the diagnosis will have their own unique experience—no two cases are exactly alike!
Some common symptoms include, but aren’t limited to, joint and muscle pain, chronic pain, chronic fatigue, muscle weakness, joint instability, dislocations, soft tissue injuries, allergies, and posture issues. Additionally, people with hypermobility may experience digestive issues, anxiety, and even problems with temperature regulation due to the way their connective tissues affect their body systems.
Is there a link between them?
Even though there isn't enough definitive proof to say with 100% certainty that there’s a clear link, emerging studies suggest there might be connections between neurodivergent conditions and hypermobility. However, it can take a long time—up to 17 years—for new findings to make their way into GP practices.
For instance, a 2021 study (ref 1) looked at 431 adults diagnosed with ADHD and found that a striking 73% of them also had another psychiatric disorder, such as anxiety, PTSD, or learning disorders. This suggests a high likelihood of overlapping diagnoses among neurodivergent conditions. Additionally, 78% of those adults tested positive for Hypermobility Spectrum Disorder (HSD).
In contrast, among the 417 adults in the study who were not diagnosed with ADHD, only 19% reported having one or more psychiatric diagnoses, but 51% showed symptoms of HSD. This study also states that symptoms from HSD can either mask or worsen the signs of psychological conditions, potentially leading to misdiagnosis or missed diagnoses.
A Swedish study from 2016 (ref 2) echoed these findings, revealing that individuals with HSD were 5.6 times more likely to receive an ADHD diagnosis compared to those without HSD.
Further, a 2022 study (ref 3) found that 50% of individuals diagnosed with ADHD, Autism, or Tourette syndrome also had HSD, compared to just 20% of those without a neurodivergent diagnosis.
This research highlights the need for medical professionals to better understand the connections between the brain and body in order to accurately diagnose and support individuals with these interlinked conditions. The lack of awareness could have negative impacts on people’s health.
While there are no conclusive reasons for why these conditions may be linked, sources like Neurolaunch.com suggest that genetic factors and developmental delays could play a role. Both neurodivergent conditions and HSD can lead to developmental delays, both physically and cognitively, which can create a cycle that exacerbates symptoms and increases the likelihood of multiple diagnoses. There may also be connections involving neurotransmitters, connective tissue, and the brain.
Scienceoveracupper.com discusses how the relationship between HSD and neurological conditions hints that collagen might play a significant role in linking the two. However, as of now, there isn’t enough scientific evidence to confirm this.
Individuals who have both a neurodivergent condition and HSD face a unique set of challenges that go beyond managing each diagnosis on its own. Common issues may include:
Increased risk of injuries due to joint instability combined with inattention, impulsivity, or lack of coordination. These injuries can often be more severe.
Sensory processing issues, as both neurodivergent conditions and HSD can heighten sensitivity to external and internal stimuli, leading to overwhelming sensory overload.
Elevated anxiety and low self-esteem stemming from emotional challenges and cognitive differences.
A higher likelihood of being diagnosed with another neurological condition.
Difficulties with social interactions and job performance, often accompanied by anxiety.
On a personal note, finding a balance between staying active and getting enough rest can be incredibly challenging. My mind is always eager to engage in activities, but my body often needs downtime. Staying physically active is essential for my overall health and happiness, but if I push too hard, I risk injuries or extreme fatigue that can force me to rest for weeks or even months. During those periods of inactivity, I often feel bored and frustrated, and other symptoms like restless leg syndrome and joint pain can flare up, making me acutely aware that I need to get moving again. However, if I jump back in too quickly, I might end up re-injuring myself or feeling even more exhausted.
It’s a frustrating cycle that feels almost impossible to escape once I’m caught in it, and it’s easy to dig myself deeper into this hole. With ADHD, I also struggle to process what returning to a hobby or sport would entail, leading to a mental battle alongside the physical one. This combination can be utterly exhausting, and I often find myself anxious about what others think—wondering if people at the clubs I attend will judge me for not showing up or see me as weak when I need to take breaks.
So, as we wrap up this journey into the link between neurodivergence and hypermobility spectrum disorders, it’s pretty wild to see how much we’ve uncovered. We’ve looked at some interesting studies, and it’s crazy to think that it might take up to 17 years for doctors to catch up with all this new info. That’s a long time for people to wait for the understanding and support they need! The fact that we can learn this so easily with information out there to learn and the medical professionals aren't even aware is concerning!
But hey, things are changing. More people are talking about it, and awareness is definitely on the rise. It’s super important for everyone—whether you’re a doctor, a researcher, or someone living with these experiences—to recognize how these conditions can really affect life. The more we share our stories and insights, the more we can push for the changes that are needed.
Let’s keep the conversation alive and advocate for better research and training for healthcare professionals. It’s all about making sure that people don’t have to struggle in silence or wait forever for the help they deserve. Here’s to a future where we understand neurodivergence and hypermobility as part of the beautiful tapestry of human experience.
Keep sharing your experiences, because they matter! If you have any thoughts about anything discussed here, please get in contact. You can either comment below or message me on social media!
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