Hidden Disabilities - Sunflower Initiative
The Hidden Disabilities Sunflower Initiative works to raise awareness for those living with various invisible, hidden and chronic conditions and disabilities. Such aspires to provide individuals with a subtle way of being able to be identified in public spaces, which aims to reduce the various misunderstandings and judgements that can arise with many of these conditions.
The use of the terms ‘hidden’ and ‘invisible’ disabilities refer to various conditions or chronic illnesses, such as, but not limited to: Fibromyalgia, Ehlers-Danlos Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Endometriosis, Dysautonomia, etc. Therefore, these conditions may not be outwardly apparent, however, they still can have an impact on various areas of daily life.
The implications of invisible conditions are just as diverse as the individuals experience them (our unicorns!). These invisible conditions range from physical to neurological to cognitive to neurodevelopmental to sensory processing conditions, etc. Many people encounter significant barriers due to their condition, whether they are persistent or fluctuating in nature.
The utilisation of the Sunflower by the Hidden Disabilities Sunflower Initiative, is a representation of the universal symbol for positivity, resilience, and support. The sunflower icon encourages greater awareness of others in public spaces to promote inclusion, aspiring to allow people to access support without having to explain or justify their needs based on their conditions. Such aspires to promote empathy and respect within the community, fostering an environment where people feel seen, understood, and supported.
Dysautonomia: Navigating the Hidden Challenges
One of the conditions that this post will talk to is Dysautonomia, in recognition of Dysautonomia Awareness Month (October). Whilst we might have come to the end of October, this is something that Evolving Pain sees a lot of and we get lots of questions about it.
Brief Overview of the Nervous System
There are two main parts of the nervous system:
Central Nervous System - consists of the brain and spinal cord, serving as the body’s control centre
Peripheral Nervous System - consists of the various networks of nerves that extend from the spinal cord to various parts of the body. These nerves allow for communication between the brain and the rest of the body.
The image below is an illustration of further division of the nervous system:
What is Dysautonomia?
Dysautonomia refers to a collection of disorders that impact the Autonomic Nervous System (ANS). Dysautonomia is often described as dysfunction to the ANS, with various symptoms that can impact on an individual’s functional capacity. People with dysautonomia have an imbalance in their ANS, leading to overactivity, underactivity, or inappropriate responses of the ANS to daily activities. Some of the common symptoms/signs of dysautonomia include, but are not limited to:
One of the most common forms of dysautonomia is Postural Orthostatic Tachycardia Syndrome (POTS). POTS involves an abnormal increase in heart rate that occurs when standing, causing symptoms such as lightheadedness, fatigue, palpitations, fainting, and cognitive difficulties.
In recent years, there's been growing recognition of the impact of dysautonomia on mental health and emotional health and wellbeing. The presence of chronic symptoms, unpredictable flare-ups, and a lack of understanding from others, has the potential to lead to greater feelings of isolation, anxiety, and depression. This also resonates with many of the other conditions that we see at Evolving Pain, but also in recognition of those aligned with the aforementioned relating to the Hidden Disabilities Sunflower.
Strategies to Support Symptom Management
There are various strategies and tools that we can work with you on to assist you with the management of dysautonomia (and the associated symptoms), with some of these inclusive of, but not limited to:
Utilisation of Compression Clothing: For many with dysautonomia, due to the presence of blood pooling. This happens when blood collects in the legs and/or hands, rather than pumping back to the heart, causing the impacted area to be red/purple/blue or mottled in appearance. Compression aids in promoting the circulation of the blood back towards the heart. Compression clothing comes in many different types including socks, leggings, abdominal binders, etc.
Increasing Fluid and Electrolyte/Salt Intake: Many people with dysautonomia experience low blood volume (referred to as hypovolemia). Through the utilisation of electrolytes/salt, this can help maintain fluid balance within the body, as the sodium helps with water retention, subsequently increasing the amount of water that remains in the body. Please make sure you consult with your healthcare professional before increasing salt and fluid intake, as there are contraindications for this with certain conditions.
Try to Reduce Exposure to Triggers: This is much easier said than done, and yes, for anyone who knows me, I need to listen to my own advice! Some of the triggers than can worsen autonomic symptoms include, but are not limited to:
Dehydration
Temperature - particularly hot weather
Stress
Certain foods
Illnesses and/or infections
Pain (understanding that this is very much easier said than done)
Body Positioning Considerations: As many people will experience an increase in symptoms when standing, there are benefits to completing various activities whilst seated, such as showering, engaging in meal preparation or dressing. Additionally, there can be benefits to elevating your legs when resting, to reduce the presence of blood pooling in the lower limbs.
Using Cooling Items: Due to the challenges that are often encountered with temperature regulation and increased perspiration, the utilisation of cooling vests, cooling scarves, cooling pillows and cooling bed overlays, can be helpful tools to assist with this.
Continuing with Movement (where safe and appropriate to do so): This is one that you should always consult with your movement based practitioner, such as a physiotherapist, about. However, it is important to try to maintain a level of conditioning and endurance within the body to try to prevent deconditioning due to heightened states of inactivity.
Consideration of Sensory Modulation Strategies: By adjusting the environment to better suit their sensory processing needs, this can reduce overwhelm, ease fatigue, and balance the regulation of the nervous system. This approach can be empowering for many as it allows people to regain a sense of some control over their symptoms and overall quality of life.
By no way is this list exhaustive and there are various other strategies that can be explored with you to assist with the management of your dysautonomia. We know that there is no one size fits all solution, and everyone has their own unique needs based on their own presentation and life. So please feel free to reach out if you have any further questions or speak to your treating healthcare practitioner for further information.
It is hoped that by continuing to raise awareness into various areas of invisible illnesses/conditions, that there is a greater understanding of invisible illness/conditions, with greater opportunities for empowerment and inclusivity within society. Whilst there may be complexities, you are not alone on your journey. We are here to be the passengers on your bus, as you drive the way through your own journey of life.
Further Resources:
Australian POTS Foundation - https://potsfoundation.org.au/
The Ehlers-Danlos Society - https://www.ehlers-danlos.com/dysautonomia/
Hidden Disabilities - https://hdsunflower.com/au/
Comments