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Working with ME/CFS
ME/CFS can greatly reduce our ability to do things other people may take for granted. Our world is largely structured around working, and for many people with ME/CFS this may not be an option.
But for people with mild or moderate ME/CFS, it may be possible to work anywhere from a few hours a week to full-time. Often this requires the person with limited capacity to choose between working and other aspects of life, such as housework, childcare and family responsibilities, rest and social needs.
So, if working takes so much from our already limited lives, why work?
In our current environment finances are a big motivator for everyone, but income isn’t the only thing we get from working. A job can provide us with social connection, a sense of purpose, goals, and a way to contribute to our families and communities. Chronic illness can be isolating, so people with ME/CFS who are able to work even a few hours a week can benefit from a way to maintain a connection to the larger world around them.
What to do when we become unwell?
When you first develop ME/CFS or Long Covid or enter a period of more significant illness than usual, it’s important to look after yourself and learn to manage your symptoms. You may want to “push through” and try to maintain the same level of activity, but this can lead to a worsening of symptoms and delay recovery.
Where possible, discuss leave options and a gradual return-to-work plan with your health provider and employer. Taking time off work in the initial stages of illness followed by a gradual return to work may help support long-term stability and symptom management.
Once you have had time to recover and adjust, it is ideal to return to work gradually rather than all at once. The goal of resting and pacing your return to work is to achieve a maintenance phase, where you can consistently manage your hours and work demands. Keep in mind that this may look different than you are used to. You may need to reduce your hours or take advantage of possible workplace accommodations to make work maintainable for you going forward.
Unfortunately, we all know that achieving stability doesn’t mean you will never be unwell again. ME/CFS and Long Covid can be episodic in nature, requiring multiple periods of time off or ongoing adjustments to workplace support and personal symptom management. Because of this, it is important to identify how much you’d like to disclose to your workplace, when to tell them, and what you could gain from doing so. Ideally, a collaborative and supportive relationship with your employer around your disability allows you to maintain work effectively, and your employer to access your full value as an employee.
Deciding whether to disclose a disability or health condition at work is a personal choice. Factors such as workplace culture, the nature of your role, and whether accommodations are required may influence your decision. Some people choose to disclose early, while others wait until support is needed.
Workplay Accomodations
If you do share your situation with your employer, they may be legally required to provide you with reasonable accommodations. These are adjustments that can be made in the workplace without causing significant disruption for the employer, that would allow you to participate to your fullest ability.
Some accommodations that may benefit people with ME/CFS are:
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Flexible work hours
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Part-time work options
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The option to work from home where reasonable
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Written or recorded instructions, meeting notes etc
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The option to work seated
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The opportunity to rest during work breaks
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Mobility aids or assistive devices
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Accessible bathrooms and bathroom breaks
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A quiet workplace, or noise-cancelling headphones or earplugs
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Improved ventilation, open windows, or reduction of scented products in the workspace
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Allowing the employee to wear a mask of their choosing in the workplace to help reduce instances of sickness
See our December 2024 newsletter for more information on potential accommodations and navigating a career with ME/CFS or long covid.
Employment Law for Health and Disability
While discrimination based on disability is unlawful in New Zealand, we know it does still happen. New Zealand employment and human rights legislation provides protections against disability discrimination and supports the right of disabled people to participate in employment on an equal basis with others. Understanding these protections can help you advocate for yourself and access support when needed.
Whaikaha (The Ministry of Disabled People) has created a summary of your rights here. This is based on several acts and codes defining the rights of disabled people in New Zealand law, including:
If your rights have been breached and you are unable to resolve this directly with your workplace, you can seek free legal advice and advocacy from Aotearoa Disability Law. Additionally, you can make a complaint to the Human Rights Commission, who provide free information and dispute resolution services.
Finding and Exploring Work Options
Workplaces
When searching for work, finding supportive and accessible workplaces is difficult but incredibly important. Certain workplaces will have visual displays to indicate their commitment to supporting their disabled employees.
Sunflower symbols from Hidden Disabilities Sunflower indicates that a business or workplace has taken steps to improve awareness of hidden disabilities and may be more receptive to discussions about accessibility and support needs.
Businesses participating in the Hāpai Access card programme may also be more understanding of those with disabilities. According to Hāpai card user submissions to the Hāpai card website, 310 organisations and businesses are now onboard with the Hāpai card.
The Accessibility Tick Program supports workplaces and organisations to be more accessible and inclusive spaces for disabled community members. They offer a programme to organisations to become more accessible and equitable. When an organisation reaches the end of their journey they are awarded with an Accessibility Tick. List of organisations involved with the program are on the Accessibility Tick website.
If you are already receiving a main benefit from Work and Income, such as Jobseeker Support or the Supported Living Payment, you can access a range of employment services free of charge. Workbridge, for example, can provide free support to connect you with disability-friendly employers
Home Business Options
Sometimes going out and working isn’t an option and other avenues may need to be explored. Your skillset may allow you to work from home as a freelancer or run your own small business.
Before exploring the idea of an at home business it is important to consider potential drawbacks:
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Inconsistent or insecure income
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Comparatively limited social interaction
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No sick days or annual leave
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Keeping track of and reporting income to Inland Revenue adds to your workload
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Blurred separation between work and home
If a home business is right for you, there are several options to consider:
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Freelancing, such as writing, IT and web design, accounting and more can be advertised through sites like Zealancer and Unicorn Factory
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Arts and crafts
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Baking
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In-home beauty services
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Paid surveys
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Pet sitting/Plant sitting/House sitting
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Reselling goods on TradeMe or Facebook Marketplace