May is a remarkable month dedicated to raising awareness about Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). These often misdiagnosed conditions affect connective tissues throughout the body, impacting joints, skin, blood vessels, and various organs. If you’ve never heard of EDS or HSD before, you’re not alone.
What is Ehlers-Danlos?
Ehlers-Danlos comes in a variety of subtypes, each with unique symptoms and challenges. Some common features include:
- Hypermobile Joints: Joints that extend beyond their normal range, leading to dislocations, sprains, and chronic pain.
- Fragile Skin: Skin that tears or bruises easily, with slow healing.
- Fatigue: Persistent tiredness or exhaustion.
- Digestive Issues: Gut problems like IBS, constipation, nausea.
- Autonomic Dysfunction: Issues regulating blood pressure, heart rate, and body temperature.
Living with Ehlers-Danlos: More than Just Physical
EDS is sometimes called the ‘invisible disability’ because its impacts aren’t always outwardly visible. The chronic pain, fatigue, frequent medical appointments, and unpredictability can deeply affect mental health. People with EDS may experience isolation, anxiety, and depression. Sadly, research indicates that chronic illnesses dramatically increase suicide risk. This highlights the importance of support systems and understanding for individuals with EDS.
Relevance for Harmless
At Harmless, we are dedicated to suicide prevention and support for those struggling with mental health due to self harm, complex trauma or other challenges. Understanding the link between chronic health conditions and suicide underlines the need to provide accessible, compassionate care. People living with chronic health and pain conditions face a significantly elevated risk for several mental health issues, including:
- Depression and Anxiety: Chronic pain and health conditions are closely linked to increased rates of depression and anxiety disorders. The constant stress, limited functioning, and uncertainty about the future can all take a toll on mental health.
- Suicide Risk: Research consistently shows that individuals with chronic illnesses, notably those involving pain, have a drastically increased risk of suicidal thoughts, attempts and completed suicide. This is often due to a combination of physical pain, mental anguish and feelings of hopelessness.
- Substance Misuse: Individuals with chronic pain may turn to substances like alcohol or prescription medications to manage symptoms or cope with the emotional toll of their condition. This can increase the risk of substance misuse and dependency.
- Reduced Quality of Life: Chronic health conditions often negatively impact social life, work, relationships and an individual’s sense of purpose. This reduced quality of life can significantly amplify feelings of distress and isolation.
Why the Increased Risk?
The elevated risk is due to a complex interplay of factors:
- Physical Pain: The constant or recurring pain associated with many chronic illnesses can be debilitating and psychologically exhausting.
- Loss of Control and Uncertainty: Feeling like you’ve lost control over your body and future can lead to hopelessness and despair.
- Social Isolation: Chronic conditions can make it difficult to maintain social connections, leading to loneliness and a reduced support network.
- Stigma: The stigma associated with some chronic illnesses and pain conditions can be very isolating and increase feelings of shame.
Importance of Integrated Care
Understanding this elevated risk highlights the crucial need for integrated care that addresses both the physical and mental health aspects of chronic conditions. Early intervention, proper pain management, psychological support and strategies for managing daily life are vital for improving the well-being of those living with chronic health conditions.
A Story of Strength and Leadership
It’s particularly meaningful for us at Harmless as our CEO, Caroline , lives with Ehlers-Danlos. Despite the daily challenges she faces, Caroline demonstrates resilience. She has learned to manage her condition with strategies that minimise its impact on her ability to lead our organisation. Caroline’s experience underscores that even with chronic health battles, fulfilling work and a supportive environment can foster well-being and offer hope for others facing similar challenges.
How You Can Help
- Learn More: Educate yourself about Ehlers-Danlos and its impact by visiting: www.ehlers-danlos.com
- Spread Awareness: Share information about EDS throughout May on social media.
- Support a Loved One: If you know someone with EDS, check in on them, offer support, and learn how to best understand their experience.
- Donate: Consider donating to organizations supporting EDS research and advocacy.
Let’s use this month to spread awareness, reduce stigma, and uplift those living with Ehlers-Danlos and other chronic health conditions.
Remember: You are not alone. Help is available.