Before we jump into this post, it feels really important to emphasise that by no means is everybody with ME/CFS is well enough to pursue employment, nor should they be expected to. I also know first-hand just how difficult it can be to find accessible employment opportunities in the first place.
However, as one of the self-named in-betweeners living with the challenges of a debilitating chronic illness whilst trying to lead an independent and fulfilling life, I think it’s important that we share as much information on this topic as we possibly can. For a bit of background, you can read more about my personal experiences with employment and becoming a chronically ill freelancer here!
If you’re new to the world of employment, or you’re returning to work after a period of ill health, you might find it helpful to know your rights as a chronically ill employee – namely, the workplace adjustments (often referred to as ‘reasonable adjustments’) you’re entitled to. In a nutshell, reasonable adjustments are modifications designed to overcome the challenges that disabled employees face. If you have ME/CFS, your employer is obligated to make reasonable adjustments under the 2010 Equality Act.
Some workplace adjustments are common and well-implemented; people know to ask for them and employers know how to accommodate them. However, with a complex condition like ME/CFS, there may well be additional changes and adaptations that could benefit your wellbeing in the workplace – and many people simply don’t know that they have a right to ask for them. In this post, I’ve listed as many of these reasonable adjustments as I can think of, in the hope that they’ll help you to think about your own unique needs and how to discuss them with your employer.
I know these conversations can feel tricky. Believe me, I’ve been there. I also know there’ll be many people in unsafe, oppressive situations where they don’t feel able to have these open conversations and worry about the risk of losing their job if they share the difficulties they face. It would be ignorant to assume that simply having more conversations about reasonable adjustments will magically make workplaces more ME/CFS-inclusive when there are so many other issues to contend with as well.
However, in the current climate, I think it can really help to remember that reasonable adjustments exist to put you on more of a level playing field with your peers and colleagues. They’re there to enable you to perform your role to the best of your ability, whilst managing your condition and looking after your health. Never, ever feel guilty for pursuing the support you are entitled to.
With all of that in mind, here are some suggestions to consider…
During Recruitment (Applications and Interviews)
- Application forms can be provided in different formats. Most application processes take place online these days, but you have the right to request a paper copy or large print version which may be more comfortable for you to read. The process for requesting forms in these formats should be detailed at the beginning of the application process, or you can contact the organisation directly to enquire.
- Request an interview location that works for you. You can specify a ground floor room, a quieter space, or a more accessible location. You can ask to be interviewed remotely via video call instead of physically attending in person – doing so can help you conserve energy and be your very best self during the interview.
- Inform recruiters of any needs or potential issues that may crop up the during interview as early as possible. You may be dealing with brain fog which affects your performance (more on this one in this Astriid blog post), or you may need to take a break if your symptoms flare: it’s completely within your rights to do so. Ensuring interviewers are aware of this in advance means they’ll be better prepared to accommodate what you need.
- Many graduate and industry jobs may require you to attend an Assessment Centre, often for at least half a day. You can ask for assistive software to help you complete tasks (more on this one later!), and you can also request for tasks to be divided up up into smaller parts. You may want to ask for the assessment to be stretched out over a longer time frame to help you pace yourself, or broken up into smaller periods of time to be completed on different days.
- How many hours can you comfortably manage per week? If you’re working part-time, you can request to work set hours per week during a time of day you know works best for you, such as every other morning, or late afternoon if you feel a bit better later in the day. Your employer may be more open to following your lead if you commit to doing at least some of your hours in regular office time (e.g. between 9am and 5pm) so colleagues can reach you during the day. Alternatively, you may prefer to request working flexibly. This is where you commit to working a set number of hours per week, but instead of specifying working hours in advance, you complete your tasks as and when you feel up to doing so.
- Consider what your overall week of working looks like. Would you prefer to work full days with a day off spaced between them, or do fewer hours each day, every day? Would you benefit from having a longer lunch break so you can rest midway through your day? Think about what will aid your personal approach to pacing. If you’re doing shift work, you might like to request a fixed shift rather than an ever-changing timetable to make it easier to maintain a routine.
- Discuss measuring productivity based on outcomes rather than hours worked. This is more a personal theory of mine and my workplace rather than something being implemented in mainstream employment (yet!), but consider requesting a task-driven work day rather than time-driven. Let your productivity be measured by the tasks you’re completing, even if you finish them earlier (or later, if you’re resting) than your set hours specify.
- Job sharing. If your role’s workload reflects a full-time job, or you’d like to further reduce your hours, initiate a discussion about job-sharing with another person. This means tasks can be divided between you, but make sure you factor in the additional time and energy that would be required for regular communication with your colleague.
- Would working from home make more sense for your condition management? You can request to work remotely on a permanent basis, or to work from home a few days per week or month. If you’re office-based, discuss with your employer a process for requesting to work from home as and when you feel you need it, and see if you can avoid having to seek permission to do so beforehand.
Working From Home
- Ergonomic equipment may be helpful for symptom management. You can find some examples of ergonomic equipment for chronic illness and tips for managing pain whilst sitting at a desk in this blog post – and remember that ergonomics refers to a huge range of assistive equipment… including adaptations for when you’re working from bed!
- Assistive technology could help you to perform your job role in a way that suits your unique needs. Voice to text software could be useful for somebody who finds it difficult to type, and text to speech software could help those who find it easier to process information when hearing it aloud (rather than reading it on a screen). Free computer plug-ins such as Grammarly can also be useful in checking for errors in written work on brain foggy days. On iOS devices, switching webpages to ‘Reader Mode’ can reduce ads and visual clutter that may be cognitively difficult to process.
- You may be able to claim tax relief for additional household costs (such as heating and electricity) if you have to work at home on a regular basis. You can find out more about that process on this gov.uk page. If you’re primarily based at home and receive disability benefits, there are various other household schemes that may help you to reduce costs.
In The Office/ Work Environment
- If you don’t drive, you may be entitled to taxis to and from the workplace, the benefits of which can be being dropped off and picked up from right outside the entrance to your workplace and minimise some of the exertion of travelling. If you don’t have an account set up through the taxi company or Access To Work, make sure all of your receipts are signed and keep them safe so you can claim back the cost!
- If you drive, speak to your employer about establishing a disabled parking space, reserved for you, closer to where you need to be so that less walking is required to get to where you need to be.
- Functioning lifts in the workplace are obviously an essential for those with mobility impairments. If lifts are out of order, provisions should be made by your employer to ensure disruption to your health and working life are minimised. If this doesn’t happen, you have the right to escalate this to HR departments or follow Scope’s process for escalating issues further.
- Requesting a quiet room or space in the workplace reserved specifically for you could help reduce over-exertion throughout the day. Even mentally knowing the space is there should you need it can be a reassurance.
- If being in a physical location or around other people aggravates some of your symptoms, think about what you personally can do to deal with this. As an example, you could explain to your employer how noise-cancelling headphones reduce background noise and make it easier to cognitively focus on your work. There’s no reason using tech like this should be an issue in the workplace, but (if you feel comfortable) explaining your needs and how equipment like this can help can lead to a more compassionate response from employers and colleagues.
- If you have severe food allergies, it’s vital that those around you are aware of this. If your allergies are airborne or life threatening, request a ban on those allergens being consumed in your environment – again, it’s completely within your rights to do this. Ensure staff know how to use an EpiPen or any other life-saving medication. Anaphylaxis Campaign have a great leaflet for employers, all about managing allergies in the workplace.
- Support workers or job coaches are available through Access To Work for those who may benefit from practical support throughout the working day.
Carrying Out Your Role
- Consider how you might make your daily tasks more flexible. Depending on your job role, it may be possible to delegate more manual and physical labour-based tasks to others and focus on desk-based work instead.
- Pay attention to your pacing and how you can make it work in an employment setting. Consider whether you feel more capable of performing certain tasks at certain points in the day – think about when you find it easiest to focus and block this out for getting through your cognitive tasks, and consider when you feel most fit for converse with others and schedule your meetings for this time. Think about how you can customise your working day to suit your chronic illness-y day – this is something that becomes easier with practice!
- If possible, establish and maintain a daily routine. Take regular breaks, especially from cognitive work, and rest before you get tired. Avoid the boom-and-bust cycle as much as you can, and don’t be afraid to set boundaries if it helps you to do so.
- Query your ability to attend necessary medical appointments during work hours. Your employer isn’t legally required to give you time off more doctor or dentist appointments (unless otherwise stipulated e.g. in company policy or in your contract). However, Citizens Advice states that if you’re disabled and your employer won’t let you take time off for a medical appointment connected with your disability, they could be discriminating against you. More info about this can be found on this page about time off work.
- Have a discussion with your employer about contingency plans for if/when you’re too ill to work. Is there an employee who can take on your duties or time sensitive commitments? Are there measures that can be taken to help you keep on top of tasks even if time off is necessary?
- Agree on a sickness-absence procedure for condition-related illness as opposed to general illness. Most companies have a policy and procedure for self-certifying illness and taking time off work, which ironically usually requires obtaining a sick note and various other administrative tasks. However, if you are routinely unwell and have to take time off due to a long-term health condition, query whether this process is necessary each and every time, or whether there are alternative methods of self-certifying illness. Ensure any agreed processes are feasible for you – if you’re too unwell to work, the chances are you’re too unwell to be chasing up admin just to prove you’re unwell. An alternative for this for condition-related illness could be to just send an email to your line manager at the earliest convenience – you could even have a template message saved in advance.
Working With Others
- Schedule in regular catch-ups with your employer, especially if you’re working from home. Monthly meetings, however formal or informal, can keep you both on the same page about any challenges you face and potential solutions for them, as well as your overall career development.
- Meetings and activities which involve working with other people can require more exertion than working alone, and you may need to rest up beforehand and schedule in recovery time for afterwards. Ensure you communicate this to your employer and make clear that having as much notice as possible before such activities will make them more accessible for you. If you feel comfortable, you may also like to explain how having plans cancelled or changed at the last minute can also be a barrier within your condition management. If plans do have to be changed, as they sometimes do, make clear that as much notice as possible is beneficial. On the same note, if you’re the one who has to cancel, ensure your colleagues are informed as early as possible.
- Ask for lenience with attending meetings. If you don’t feel well enough to attend a meeting, ensure your employer and colleagues know you’ll take it upon yourself to catch up on what you missed. If meeting minutes aren’t usually taken, you may find it helpful to ask a colleague to audio record the meeting – but make sure you have consent from participants and are aware of any company privacy policies before doing this.
- During the meetings you do attend, request the ability to take necessary rest breaks or leave early if you feel you have to. If a meeting is scheduled to last longer than you know you’re capable of attending, inform the organiser in advance and respectfully communicate that you’ll need to leave early so they know to expect this and you can discreetly slip out of the door or exit the video call.
- Although video calls can often be more accessible than in-person meetings, there are still various ways in which online meetings can be problematic for people with chronic illnesses – this Astriid video highlights some of these challenges, and how the process can be made more chronic illness-friendly.
- Encourage line managers and/or colleagues to engage with training around your disability, to better understand your condition and how they might support you. Stripy Lightbulb offers affordable e-learning courses about ME/CFS for professionals, and Action For ME offers a free Employers Guide To ME You can also find free webinars on Managing ME/CFS In The Workplace and Balancing Work With ME/CFS on Astriid’s YouTube channel, and Astriid’s Knowledge Hub is developing as we speak!
Hope you find some of these suggestions helpful!
Other Helpful Resources:
- Finding Accessible Work with a chronic illness
- Asking your employer for changes to help you if you’re disabled – Citizens Advice
- Apply for the Access To Work scheme
- Join Astriid’s Invisible Talent Pool to find inclusive employment opportunities
- Scope’s Employment Services
Where To Next?