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Invisible Illness Awareness Week: The Silent Struggles of EDS, HSD, MCAS, and Mental Health

Writer's picture: Maya IllipseMaya Illipse

Living with an invisible illness is like walking through life with heavy chains that no one else can see. This Invisible Illness Awareness Week, we’re highlighting the challenges faced by those of us with conditions like Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorder (HSD), and Mast Cell Activation Syndrome (MCAS). Although our bodies might appear "normal" from the outside, the pain, fatigue, and systemic complications we endure are real — and deeply misunderstood.


Many of us have experienced the frustration of not being believed by others, including healthcare providers. We’re often told, “You’re just stressed,” or misdiagnosed with anxiety or depression. This isn’t just dismissive — it’s damaging. Today, we’ll talk about how the invisibility of these conditions can lead to a double burden: the physical struggle with chronic illness and the emotional toll of being disbelieved.


The Burden of Invisible Conditions: EDS, HSD, and MCAS


For those who live with connective tissue disorders like EDS/ HSD, or/and the complex immune responses of MCAS, each day can be unpredictable. While these conditions have been covered in detail in our previous posts, what’s important to emphasize here is the unique emotional burden that comes with having symptoms that others can’t see.

People with invisible illnesses are often seen as “fine” or even “healthy,” because the outward signs of pain, discomfort, or fatigue aren’t obvious. But that doesn’t make the daily struggles any less real. Whether it’s joint dislocations, intense allergic reactions, or debilitating fatigue, these conditions often push people to their physical and emotional limits — all while fighting to be taken seriously.


The Overlap Between Invisible Illness and Mental Health


One of the most overlooked aspects of invisible illnesses is the toll they take on mental health. It’s hard enough living with chronic pain, but it’s even harder when you're not believed by doctors, family, or friends. The frustration, isolation, and feelings of helplessness can lead to anxiety and depression, making it even more challenging to cope.


Gaslighting in the Healthcare System:


For many people, the journey toward a diagnosis is filled with gaslighting — being told, “It’s all in your head,” or that “It’s just stress.” How many women, especially, have been told that their physical symptoms are simply the result of anxiety or depression? Instead of being thoroughly examined, we’re given a prescription for antidepressants and sent on our way.

This is especially common for women with EDS, HSD, or MCAS, whose symptoms can be misinterpreted or dismissed entirely. The stigma surrounding mental health is compounded when you’re misdiagnosed. While anxiety and depression are very real issues, they are often used as blanket diagnoses when doctors don’t dig deeper into the root causes of physical symptoms.


The Question No One Asks:


How many people have been diagnosed with anxiety or depression, when their underlying issue is an undiagnosed invisible illness? Too often, people with chronic conditions go years — even decades — without proper diagnosis or treatment because healthcare professionals default to mental health explanations rather than investigating physical causes.

Being misdiagnosed or disbelieved doesn’t just affect your physical health; it takes a serious toll on your mental well-being. It’s exhausting to constantly advocate for yourself in a system that doesn’t listen, and that exhaustion can lead to hopelessness, fear, and worsening mental health.


Recognising the Full Picture


To address invisible illnesses, we need to recognise that both physical and mental health are interconnected. The physical pain is real, but so is the emotional exhaustion from years of not being believed. We can’t heal one without addressing the other.


1. Validating Invisible Pain:


For healthcare providers and loved ones, the first step is believing what you can’t see. Just because someone doesn’t “look sick” doesn’t mean they aren’t struggling. Listening and validating their experience without minimising it is crucial.


2. Challenging Misdiagnoses:


If you feel you’ve been given a quick-fix mental health diagnosis without proper investigation into your physical symptoms, don’t hesitate to challenge it. Push for more testing, get second opinions, and find specialists who understand complex, invisible conditions. Your symptoms deserve more than a surface-level diagnosis.


3. Seeking Mental Health Support:


Living with an invisible illness takes a toll on mental health, and it’s important to seek help. Therapists who specialise in chronic illness can help you navigate the emotional challenges that come with feeling misunderstood and unseen. Mental health care is a vital part of the holistic approach to managing invisible conditions.


4. Building a Support Network:


Finding a community of people who understand your struggles can be incredibly healing. Whether through online support groups or local communities, connecting with others who live with invisible illnesses can help you feel less alone and more empowered in your journey.


5. Care for Your Body: Activate the Parasympathetic State


It's easy to feel disconnected from your body when living with chronic pain, but taking small steps to care for yourself can make a significant difference. Bringing your body into a parasympathetic state—the "rest and digest" mode—helps to calm the nervous system and promotes healing which can improve symptoms and reduce pain. Techniques like deep breathing, gentle movement, and mindfulness are powerful tools for managing stress and promoting physical recovery.


At ParaMotion, we focus on mindful, gentle movement therapy designed specifically for people with EDS, HSD, and connective tissue disorders. Our approach supports your body’s natural healing by reducing pain and improving mobility while helping you feel more connected to your body. You shouldn’t have to live in constant pain or feel invisible in your struggles. We’re here to help you regain control and improve your quality of life.


Conclusion: A Call for Compassion and Understanding


This Invisible Illness Awareness Week, let’s amplify the voices of those who live with hidden disabilities. Let’s challenge the stigma surrounding invisible conditions, demand better care, and continue to break the silence about the realities of living with conditions like EDS, HSD, and MCAS.


To those of you who live with an invisible illness, know that you are not alone. You shouldn’t have to fight to be believed, and your experiences are valid, even when others can’t see them. We see you. We hear you. And we stand with you in your journey toward better understanding, better care, and better health.



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