A group of workshops took place with individuals who declared hidden disabilities, as a safe space to talk about their experiences and this article provides a background as well as an overview of the insights produced.
Hidden disabilities are common health problems, often episodic, invisible, and unpredictable, which makes planning and management of the condition at work difficult. They can be physical, sensory, mental, or neurological with few outward signs but can have a major impact on people’s lives. Workshops aimed at employees with physical or mental health conditions, considered as hidden disabilities, were held to gain a better understanding of the impact on work. 1 in 5 people (21 %) has a disability, according to Family Resources Survey (UK) 2018 to 2019 of which, a large proportion have hidden disabilities as can be seen in Figure 1, with 42% stating this affects their work. By 2030 40% of the UK working population are predicted to have a long-term health condition and that doesn’t account for the 1.5% of the population with Long COVID (ONS).
A hidden disability is a condition that might not be noticed and not all conditions need treatment or adjustment. It is important to remember that comparisons between people with similar conditions should not be made as all individuals are different and their condition and its treatment is individual to them.
These workshops were undertaken to get common views of the effects on individuals and work. Galen of Pergamon 172 AD, a Greek physician, surgeon, and philosopher, stated that employment is nature’s physician, and is essential to human happiness. Whilst we may not all agree with this entirely, most would accept that work is good for our mental wellbeing, giving us a sense of purpose and connection. Taking into account that all individuals that took part in this study were in active employment, it was useful to understand what impact conditions had and what support would enable individuals to remain in work optimally. Disclosure in this study was voluntary and confidentiality was maintained. Examples of hidden disabilities declared included depression, anxiety disorders, arthritis, diabetes, hearing impairment, Crohn’s disease, colitis, blood disorders and cancer.
Disclosure
One interesting theme that arose was non-disclosure, i.e., not declaring a health condition within the workplace. It is estimated that one in three employees with a long-term health condition has not discussed it with their employer. The reasons a person may decide not to disclose to their manager are multifactorial. They may feel that they can cope and will disclose if they need to, they may have had frequent changes of manager and the opportunity hadn’t arisen, feelings of embarrassment, feeling they won’t be believed and fear of the consequences, may be some of the reasons for non-disclosure. Without disclosing, the employer is unable to make adjustments or provide support potentially leading to individuals working when ill and struggling to cope. This can cause presenteeism, described by Roberston Cooper as not performing effectively, and ultimately result in sickness absence. Sadly, disclosure often occurs when people can’t cope anymore and have no reserves left.
The effects of hidden disabilities on an individual in work
- Work-life balance due to resting when not working, to be fit for work
- Work satisfaction by trying to maintain workability
- Social isolation, with reduced interaction at work because of the perception that colleagues don’t understand
- Skills development from a loss of confidence, low self-esteem, and self-worth in some people
- Career development and the promotion process can be daunting, affecting the perception of job prospects and job security
All of the above can influence health and wellbeing.
On a positive note, Occupational Health can make a significant difference with their knowledge of workplace health, health care services and supportive measures in advising both managers and
employees. Improvements in technology in the last 30 years have helped enable many to continue working, particularly those with neurodiverse conditions. Medical advancements continue, even during the pandemic to improve the management of health conditions. Attitudes and perceptions of disability are changing with increased knowledge and awareness and legislation exists to ensure support is provided wherever this is feasible. The outlook is not all negative for those with hidden disabilities.
Common themes
Several common themes arose from the workshops.
A minority noted negative aspects of working from home due to feeling isolated and missing social contact, having distractions such as children or being a carer, and lack of privacy. Many felt that their prospects of promotion were reduced because they found the interview process stressful and felt that they would not be able to demonstrate their skills. Some found their colleagues were dismissive of their condition and they lacked understanding. Others reported difficulty starting conversations with their manager and feared that confidentiality would not be maintained.
Many viewed attendance policies and processes negatively and felt that hidden disabilities were not accounted for. They noted that adjustments were often made only after the absence target had been breached and no proactive measures were in place for episodic attendances. This led to a heightened level of anxiety and a negative impact on health. Lack of consistency across an organisation contributed to a lack of confidence in the provision of support.
Supportive solutions
Having a supportive manager as long as this was consistent across the organisation was seen as helpful, however, working from home was reported as being the most beneficial solution to managing health conditions. Productivity due to fewer distractions, no commute to work and less fatigue were seen as major benefits. Many reported having no absences in over a year due to home working and an improved work/life balance. Most admitted being able to manage their health better when working from home as they had the flexibility to rest and exercise when required, felt less pressured and could control the environment. Individuals with autism reported that they were better able to control their environment at home as noise levels in the office can be most distracting. Also, they felt more confident participating in virtual meetings rather than face to face. Improved confidence and fewer symptoms of anxiety were reported by many who worked from home. It was acknowledged that regular team calls helped keep them connected to colleagues and regular one to one conversations with managers were beneficial as long as they were meaningful and included an enquiry about wellbeing, coping and the offer of support if appropriate. However, this and adjustments such as home working would not be feasible without disclosure. Therefore, trust needs to be built and openness encouraged.
Learning points
- Awareness sessions on hidden disabilities for managers as part of their training, and for managers to have Human Resource (HR) support.
- Awareness sessions for colleagues
- Peer support groups for certain disabilities
- A disability passport that documents adjustments specific to that individual
- Should individuals need to return to the office after home working, then a phased return to ease them back in
Further considerations
Occupational health services are well placed to offer support to employees with a hidden disability and referrals should be made where adjustments at work could enable an employee. Under the Equality Act, employers have to make reasonable adjustments for those considered to have a disability. Occupational health advisers (OHA) can give professional advice on appropriate adjustments to managers which enable employees to remain at work.
During the pandemic, many people have been unable to access treatment for symptoms, surgery may have been delayed and this impacts on workability. Occupational health services such as those offered by PAM Group provide psychological services, physiotherapy and have a team who are specialists in providing services and equipment for neurodiverse conditions. Access to such services may enable an employee to continue working. Access to a health coach to help with fitness, wellbeing, diet, and lifestyle would also be a great benefit in enabling people to manage their health at work.
Ensuring that appropriate display screen equipment (DSE) is accessed as well as regular eye tests for those who work with computers.
Many workplaces have Mental Health First Aiders who can support and signpost employees, but wellbeing Support Groups can be set up to support those with disabilities and if not, employees may wish to set one up.
Various charities will assist organisations with education and training, and some provide financial support. The hidden disability sunflower scheme was set up a few years ago at Gatwick airport as it was recognised that additional assistance was required for people with hidden disabilities. They issued green lanyards with the yellow sunflower for people who needed assistance and large retail stores now issue these and have trained their staff to aid those wearing them. Access to work may provide special equipment, assist with adaptations and adjustment or support a worker getting to and from work, Remploy or Able Futures for long term mental health support.
Conclusion
Attitudes and perceptions regarding disability are changing and knowledge and awareness through the media have increased. However, the insights gained indicate more can be done to assist employees with hidden disabilities. To meet the needs of workers with diverse episodic conditions, there is a need for fairness and transparency in the workplace concerning how hidden disabilities are managed. Work is an important health outcome and work challenges need reducing so that the employee is no longer impacted by their disability.
Sally Canzio SCPHN, Occupational Health PAM Group Training Lead
References
Sources: Steadman et al, 2016; NHS, 2012; Labour Force Survey, 2012; Vaughan-Jones & Barham, 2009
‘Improving Lives: The Future of Work, Health and Disability’ Government paper 2017
Health warning for employers Supporting older workers with health conditions.
HSE: Developing an intervention toolbox for common health problems in the workplace
Research: Disclosure, Privacy and Workplace Accommodation of Episodic Disabilities: Organizational Perspectives on Disability Communication-Support Processes to Sustain Employment. Monique A. M. Gignac et al
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