Right now this is very topical. Think COVID. Think the silent killer, the illness that can creep up at anytime and consume our bodies. We may not feel it, see it or have symptoms. That doesn’t mean we aren’t all carriers of the disease. Therefore, if we recognise and accept this, then why are we still so far behind in accepting, understanding and supporting those who suffer in silence, who are left feeling judged and unsupported everyday?
For the best part of two years COVID data has been force fed to us on the news, in the streets, in our economy, around the world. An invisible illness with the potential to kill. Following the scientists, the data, the analysis, the vaccines all brought to the surface for all to see.
So why can’t we give people the platform to be in a position where they have a way to share their own invisible illness or disability? It may not be killing millions of people but that doesn’t mean it’s less serious or less life threatening. What about Long COVID? Do we judge people or question the genuine distress and disability that this causes? So if not why do we question or fail to ask those with other invisible illnesses how they really feel and offer them our support.
In this three part series we will investigate;
What an Invisible Disability/Illness is, Misconceptions, Recognition, Support Mechanisms and examples of Health Conditions that will challenge your perceptions.
Focus on Mental Health Conditions, their symptoms, misinterpretations and stigma.
Finally, seek some support and accessibility to sport and exercise within our communities.
What are Invisible Disabilities?
According to Disabled World;
‘Invisible disability, or hidden disability, are defined as disabilities that are not immediately apparent. Although the disability creates a challenge for the person who has it, the reality of the disability can be difficult for others to recognise or acknowledge. Others may not understand the cause of the problem, if they cannot see evidence of it in a visible way’.
North West Primary care describe them as;
‘An Invisible illness is one that does not exhibit externally visible signs or symptoms. Those with invisible illnesses and disabilities may have symptoms such as pain, fatigue, dizziness, weakness, or mental health disorders. Many of these conditions deeply impact the people suffering, but show no obvious signs to an outside observer'.https://www.nwpc.com/supporting-people-with-invisible-illness/
Glamour Magazine reports that;
‘Living with an invisible illness or disability can be incredibly isolating. From mental health conditions to certain chronic and autoimmune diseases, living with an illness that others can't see can lead to judgement, stigma and widespread lack of understanding’. (https://www.glamourmagazine.co.uk/article/invisible-illness-disability-photoshoot)
Misconceptions Associated with LTHC’s & Disabilities
So let’s focus on the fact of not being obvious with some questions and answers, a little scene setting if you like to follow on from the definitions above.
Ever seen someone running and then entering a disabled toilet and wondered why? Have you considered that they may have Diabetes Insipidus? A condition linked to the Pituitary Gland that means sufferers can need to wee every 15-20 minutes and in a day produce between 3-20 litres of urine a day? Now could you understand?
Have you ever sat and looked at someone in a wheelchair and seen their legs move and thought, they can’t be paralysed so they don’t need that chair? Have you ever considered they may have a condition such as Ehler’s-Danlos that means sufferers have a lack of collagen in their ligaments which leads to frequent dislocations, subluxing joints and the added symptoms of fatigue, chronic pain, memory problems and issues with digestion?
Ever seen people in a wheelchair and thought how sad it is that they have to use a chair all the time? Have you ever considered they may have a neurological movement disorder which can lead to additional pain and fatigue if they do not rest regularly, but at times they may be able to walk, use crutches or walking sticks to support their bodies?
Ever seen people parking in a disabled bay, putting their badge up and then walking away? Have you considered that they may have a vision impairment? Do you realise that partially sighted or blind people won’t always have a white cane, glasses or a guide dog?
Sadly many people with an invisible illness/disability face not only judgement but abuse from others as they fail to acknowledge the serious nature of the problems and challenges faced each day. Each day being different can make this more challenging. So what is being done about this?
Coping With An Invisible illness
In 2020 Glamour Magazine gave a voice to those with invisible conditions. Focusing on a determined ambassador Jessica Logan who suffers from Chronic Fatigue and Inflammatory Bowel Disease, who put time in lockdown through the pandemic to;
‘create a photoshoot where each person would write words on themselves, representing their own internal battles or abusive comments people have made about their disability’.
Logan says.
"The aim was to help them release those negative feelings, and create awareness so that those with invisible illnesses never have to feel so alone again’.
Targeted Support Available
Acceptance of your condition can be empowering and provide a coping mechanism for many. Sharing it can be more difficult.
Following on from the photoshoot mentioned above Logan has launched her Making The Invisible Visible campaign. Whilst not everyone would feel comfortable in participating in such a way these brave individuals coming together have supported many others.
Hidden Disabilities have developed The Sunflower emblem, which aims to provide a discreet way to alert others;
‘Wearing the Hidden Disabilities Sunflower discreetly indicates to people around the wearer including staff, colleagues and health professionals that they need additional support, help or a little more time. Used by major airports and venues and in the UK, by many supermarkets, railway and coach stations, leisure facilities, the NHS, a number of police, fire and ambulance services, and an increasing number of small and large businesses and organisations’. (https://hiddendisabilitiesstore.com/about-hidden-disabilities-sunflower)
They continue with;
‘Without a visual cue, it can be difficult for others to identify, acknowledge, or understand the daily challenges faced by people living with a hidden disability. We wanted a discreet sign which was still clearly visible from a distance as well as being distinctive, joyful, and dynamic. We chose a sunflower as it suggests happiness, positivity, strength as well as growth and confidence. It is a universally known flower as well as being gender-neutral. It intends to allow everyone with hidden disabilities to choose to be visible when they need to be’. (https://hiddendisabilitiesstore.com/about-hidden-disabilities-sunflower)
The Hidden Disabilities Store provides the opportunity to purchase simple lanyards and some great cards. Some very topical ones include face covering exemptions, extremely clinically vulnerable and if a lanyard isn’t for you then there are face masks, hand sanitiser holders and stickers both for cars and people. A more personalised version of the cards are available through Make It Yours. If your condition isn’t already covered you can add the detail you want and your photograph. Theres even a Location Map so you can check where you will be recognised and reduce the stress around acceptance and recognition.
The Invisible Disablity Project has tried to create projects and services dedicated to interrupt the silence around what it is like to live with an invisible disability, through 6 key themes;
Early Learning
Speak Your Power
This is me Videos
Word Definitions
End Discrimination
Blog Posts
Then Across the world Invisible Disabilities Week will be celebrated in October ’21! So awareness is growing and blossoming!
The Effect Of Lack Of Understanding
Here we return to long COVID.This article from the NHS looks at Long Term Health Conditions & Mental Well Being. They comment that;
‘If your physical health is affecting how you feel or you are worried about long COVID, these 10 simple tips are a great place to start supporting your mental wellbeing’.(https://www.nhs.uk/every-mind-matters/coronavirus/long-term-health-conditions-and-mental-wellbeing/
These include;
1. Exploring ways to stay connected
2. Accessing practical support
3. Relaxation or mindfulness ideas
4. Distracting yourself
5. Planning your time
6. Pacing yourself
7. Getting information from trusted sources
8. Getting better sleep
9. Looking after your lifestyle
10. Seeking medical advice
This just highlights how important it is for people to understand and, accept and allow free speech over their condition. A lack of this can cause an additional problem to develop, manage and control.
Recognition & Support - Country Wide Initiatives
Over the pandemic many companies have forged ahead with the promotion of their products but also their support and compassion towards overs, looking at anything from Mental Health Programmes, development of product linked programmes and awareness raising.
ITV is a partnership between Scope and the Creative ITV team. A clever concept sees an advert which;
‘features Chase star Paul Sinha, author and TV personality Katie Piper, actress and Loose Woman Kelle Bryan and Real Housewives of Cheshire star Tanya Bardsley talking about themselves to camera - their hidden talents and achievements, their nicknames, their hobbies, the alternative careers they’d have loved to pursue.They finish by revealing what many also don’t know about them. That they each have invisible disabilities, and that these are also part of what makes them who they are’. (https://www.itv.com/presscentre/press-releases/itv-launches-new-air-campaign-highlight-invisible-disabilities)
They highlight that even though 1 in 5 people in the UK have a disability only 40% were confident to explain or divulge this information. In a bid to support those with invisible conditions they are committed to educating themselves, ensuring representation of disabled people in high positions, on screen and at entry level to the broadcasting and journalism world.
Breaking Limits by Sure Deodorant surveyed 1000 people and, discovered that 1 in 2 had the fear of judgement as their reason not to get active. There are numerous invisible conditions which can cause excess sweating, embarrassment and judgement. But by combining their great knowledge of products and, committing to offer help have launched a programme to support people with these conditions and, allow them to feel more confident to get out, moving and progressing to life within their local communities. We will return to this in more detail in Part 3.
This is more of an introduction than a solution. There are too many Invisible conditions to include in one article. However, awareness, open-minded, strong individuals and forward thinking companies are seeking to help and support the LTHC community. A platform from which there is an opportunity to educate, follow and search for more. That is exactly what we will do next time with a focus on Mental Health Conditions.
Links
North West Primary Care - Supporting Those With Invisible Illness
Glamour Magazine - Invisible illness/Disability PhotoShoot
Glamour Magazine - Making The Invisible Visible
Hidden Disabilities Store
Hidden Disabilities - About The Sunflower
Hidden Disabilities - Make It Yours
Invisible Disability Project
Invisible Illness Awareness Week 2021
Long Term Health Conditions and Mental Well-Being
ITV - Highlighting Invisible Disabilities Campaign
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