"You Seem OK Today": Understanding the Unseen Struggles of Autoimmune Diseases in the Workplace

Faye is a Clinical Psychologist (MA) and the Chief Science Officer at Wellics. She…

Ever imagined starting your day feeling like you've run a marathon before even getting out of bed? Picture the struggle of battling an invisible illness—where even the simplest tasks, like dressing up or having breakfast, feel like climbing Mount Everest.

The impact of these unseen battles on the workforce is staggering, with 50% of those with chronic conditions silently fighting within our ranks, often overlooked and underestimated.For many with autoimmune diseases, this is their reality. A staggering 78% of full-time workers in the US openly report that their job performance suffers because of their autoimmune disease with top concerns being: fatigue, pain, and physical limitations

Understanding the unseen 

Autoimmune diseases, where the immune system mistakenly attacks healthy cells, manifest in over 100 different forms including rheumatoid arthritis, lupus, and multiple sclerosis. These conditions don't always show visible symptoms, making them particularly challenging to recognize and understand in a workplace setting​​. Living with an autoimmune disease is akin to navigating a world where one’s own body is an unpredictable adversary. On the outside, these individuals may appear perfectly healthy, but internally, they are often grappling with a storm of symptoms. Each day can bring a new challenge, be it debilitating fatigue, joint pain, or brain fog that clouds their thoughts and hampers their ability to focus. This inconsistency in symptoms – where one day they might function normally and the next, barely able to get out of bed – makes planning and meeting professional commitments a challenging task. 

A pressing concern in the corporate world is the tendency of employees with autoimmune diseases to conceal their condition. The fear of being misunderstood or gaslighted, combined with the unpredictability of symptoms often leads them to suffer in silence.  

In addition, the invisible nature of these diseases adds a layer of complexity. Without visible signs, colleagues and employers might not recognize the severity of their struggle. This invisibility often leads to misconceptions and underestimation of their condition, exacerbating the emotional toll. The unpredictability of symptoms means that an employee with an autoimmune disease might be fully engaged in their work one moment and then overwhelmed by a sudden flare-up the next.  

This hidden struggle is a testament to the resilience of these individuals but also highlights a significant gap in workplace awareness and support. 

 

Empathy in Action: Guiding Workplace Managers to Accommodate and Support 

As we delve deeper into the complex realities of living with an autoimmune disease, it becomes clear that workplace empathy and awareness are not just niceties but necessities. For managers and leaders, understanding these invisible struggles is the first step in creating a supportive and inclusive work environment. This understanding must then translate into practical accommodations and adjustments, ensuring that employees with autoimmune diseases can thrive in their professional roles without being hindered by their health challenges.  

The following tips are designed to guide workplace managers in making these essential changes: 

1. Incorporating Expert Advice for Comprehensive Understanding:

To deepen their understanding of autoimmune disease management, employers should consider consulting with experienced healthcare professionals. Additionally, direct communication with the affected employees can be invaluable. They can provide personal insights into what specific factors help or exacerbate their condition. This approach ensures that workplace accommodations are not just well-intentioned but also effectively tailored to the individual needs of employees with autoimmune diseases, leading to a more supportive and productive work environment. 

 

2. Tailored Work Environment:

Creating an ergonomic environment tailored for employees with autoimmune diseases involves a keen focus on lighting and rest areas. Adjusting lighting to reduce glare and strain, particularly by using softer, non-fluorescent lighting, can significantly alleviate discomfort. Equally important are dedicated rest areas, designed to minimize sensory stimulation. These spaces should be tranquil, away from the bustle of the office, providing a soothing environment for employees to take breaks, particularly beneficial during periods of increased symptoms or fatigue. 

 

3. Flexible Work Policies:

In addition to offering flexible working hours and remote work options, employers should consider staggered shifts or job-sharing arrangements to further accommodate the unpredictable nature of autoimmune diseases. These adjustments not only help in managing sudden flare-ups but also provide employees with the means to balance work with their health requirements. Such policies can significantly reduce the stress associated with commuting and rigid schedules, while also allowing employees to work during periods when they feel most capable, thereby maintaining productivity and job satisfaction. 

 

4. Enhance participation in meetings:

Alongside accommodating breaks for brain fog and cognitive difficulties, it's beneficial to allow employees to share their input early in meetings. This ensures their valuable contributions are captured when they are most focused. Additionally, during flare-ups or periods of intense symptoms, provide them the option to not participate in meetings or contribute in alternative ways, such as through written summaries or comments. This approach recognizes the varying needs of these employees and supports their active engagement in a manner that respects their health challenges. 

 

5. Healthcare and Financial Assistance:

Understanding the financial burden of managing autoimmune diseases is crucial. Beyond offering health benefits that cover treatments and doctor visits, employers should consider providing additional financial support for medications, which can be prohibitively expensive. The inclusion of wellness programs that specifically address the needs of autoimmune diseases, like specialized therapy or nutritional guidance, can also be a significant support. These initiatives not only alleviate the financial strain on employees but also demonstrate the organization’s commitment to their overall health. 

 6. Inclusive Team Dynamics:

In promoting inclusive team dynamics, it's vital to go beyond general awareness. Regular team-building activities and workshops tailored around understanding autoimmune diseases can be highly effective. Such initiatives can help break down barriers and foster a culture of inclusivity. Managers should also encourage peer support systems, where colleagues can volunteer to assist or cover for teammates during flare-ups. This not only cultivates a sense of empathy and understanding but also ensures that team productivity and morale are maintained, even when individual members face health challenges.  


7. Wellness activities:

When planning wellness activities, one's organization should thoughtfully consider the physical limitations of employees with autoimmune diseases. It's important to avoid activities that could exacerbate their condition, like demanding physical exercises. Just as you wouldn't ask a person with swollen limbs to take a hike, similarly, nutrition activities should be inclusive, recognizing dietary restrictions or sensitivities. Tailoring these activities to be accessible and comfortable for all demonstrates a deep understanding of diverse health needs, ensuring that wellness initiatives are truly beneficial and inclusive.

As we work towards a workplace that truly supports those with autoimmune diseases, let's remember it's more than just about making changes. It's about understanding and caring for our teammates who face these challenges every day. By adopting these inclusive practices, one's organization not only fosters a more supportive work environment but also significantly enhances its social impact. Demonstrating care for employees with autoimmune diseases strengthens team cohesion and boosts morale. This commitment to understanding and empathy not only benefits the immediate work culture but also extends the organization's influence, positively affecting its reputation and appeal to potential employees and partners who value compassionate, inclusive workplaces. 

Sources

  • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7077778/
  • https://www.medicalnewstoday.com/releases/294416#1

 

 

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