EDS & HSD Awareness Month – Living in a Wobbly House and Finding Solid Ground

May is Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month—a time dedicated to amplifying understanding, fostering empathy, and supporting those living with these often invisible conditions. As a counsellor and someone personally diagnosed with Hypermobile EDS, this month holds deep meaning for me. It's about advocacy, yes, but it's also about connection: creating space for stories that are often overlooked, misunderstood, or dismissed. It's about reminding people that they are not alone.

One of the best ways I can describe living with EDS or HSD is through metaphor: Imagine your body is like a house. Most houses are built with strong bricks and firm beams that hold everything in place, even in windy or stormy conditions. But if you have EDS or HSD, it's like your house was built with rubbery bricks and flexible beams. The structure still stands, but it's a lot more wobbly.

The doors might not line up right, the roof might leak under pressure, and the walls creak even on a quiet day. You might have to work harder to keep it standing, and fixing one part can cause strain somewhere else. To someone walking by, your house might look perfectly normal from the outside. But they don't see the constant repairs you're making, the energy it takes to keep things stable, or the toll it takes when a gust of wind pushes things out of place.

People on the outside don't see the mental calculations you make before doing something as simple as getting dressed, walking downstairs, or carrying a bag. They don't feel the waves of pain or fatigue after pushing a little too hard. They don't see that going on a weekend away sometimes isn't a holiday; it can be physically exhausting. They don't hear the creaking beams inside.

EDS and HSD are connective tissue disorders that affect the body's collagen, the "glue" that holds the body together. When collagen doesn't function properly, it can lead to widespread symptoms throughout the body that affect every part of a person's life—physically, emotionally, and mentally. They can come with chronic pain, joint instability, fatigue, digestive issues, and more. Yet because many symptoms are invisible, people with EDS or HSD often experience misunderstanding, disbelief, or even dismissal from others, including within healthcare settings. If I had a pound for every time a doctor told me, "You'd know if you'd dislocated something," I'd be wealthy. That's where awareness makes a real difference. Awareness leads to better support, earlier diagnoses, decreased stigma and more compassionate care. It also empowers those living with these conditions to feel seen, heard, and validated.

I have had Hypermobility (HSD) since I was a child. I was diagnosed with Ehlers-Danlos Syndrome (EDS) in my mid-twenties when there was more awareness around the condition. I was the child who could never join in P.E. lessons in case a joint dislocated. Attending A&E was second nature growing up due to recurring dislocations; my pain, due to my age, would often be dismissed as growing pains. I had my first joint surgery in my early teens, finally proving that something deeper was going on. That relief of being believed was enormous, but it came with grief, too—the grief of lost time. The grief of knowing my body wouldn't work like others—the grief of living in a world that still expected me to. Since then, I've had four operations to help restore basic mobility, and I've faced the fatigue of simply existing in a body that takes more maintenance than most. I've been stared at for using a lift instead of the stairs. I've been called lazy when I've needed to rest. All because "I don't look disabled". I've smiled through the comments, even when they hurt. Having an invisible disability is not just a physical experience—it's a profoundly emotional one. It affects your identity, your relationships, and your sense of self.

As a therapist, I work with many clients managing chronic illness, disability, and pain. Clients navigating a medical system that doesn't always understand them, carrying the emotional burden of having to explain or justify their needs repeatedly and coping with the psychological toll of ongoing pain or grieving the life they had before their diagnosis. I know how overwhelming that can be because I've lived it, too. I know how powerful it can be to sit with someone who doesn't need you to explain your body before they believe your story. I know how important it is to set boundaries, pace energy, and reclaim rest without shame.

I invite you to learn the facts about EDS and HSD and listen to the stories. Awareness isn't just about syndromes or symptoms. It's about the people behind them. It's about strength, softness, and the incredible resilience it takes to live in a body that requires constant care. I invite you to take a moment to recognise your resilience or the resilience of someone you love. If you're living with EDS or HSD and looking for a therapist who truly understands the emotional weight of your condition, please know that support exists, and you don't have to carry it all alone.

Your house may be wobbly, but you can still make it a beautiful home with the right support.

With compassion,

Abbey Brocklehurst

Minds That Matter Counselling