Disclaimer: This article draws on lived experience and provides general information and guidance, not medical or legal advice. The workplace rights mentioned apply in England, Scotland and Wales.

“But you don’t look ill.” If you live with an invisible health condition or disability, you may have heard some version of this at work. Maybe it was meant kindly, or maybe it left you feeling judged, or not believed. Either way, it sums up what makes working with an invisible illness so hard: nobody can see what you’re dealing with under the surface, so you end up explaining yourself, again and again.

This Invisible Disabilities Week, I want to look at the practical side of working with an invisible illness. This article is for anyone in paid work whose condition doesn’t show, whether or not you have a diagnosis or think of yourself as disabled. It may be especially relevant if you’ve recently been diagnosed. We’ll cover why it’s so tiring, how to manage your energy at work, how to explain your condition to the people you work with, the changes that could help, and how to manage other people’s expectations.

Why is working with an invisible illness so tiring?

Keeping up appearances is tiring in itself. Masking symptoms takes effort whether you’re in the office or on camera, and that’s before you’ve done any actual work. Add a full day, or even a few hours, of work on top, and it’s a lot to ask of energy that’s already limited. And on days when brain fog sets in, even following a meeting or replying to emails can take far more concentration than usual.

Then there’s the unpredictability. One day you feel ‘on fire’: focused, getting through your tasks and contributing in meetings. The next, you’re paying for it. How do you explain to someone with a steady supply of energy that you showed up as your best self yesterday, but today your body is working against you?

Even careful planning doesn’t always help. You might map out your week on Monday, especially if your manager expects it, only for symptoms to flare on Thursday when everything seemed to be going fine.

All of this takes mental energy too. There’s the ‘energy maths’ of making one budget stretch across the commute, the work, and family commitments and chores in the evening. And there are the constant decisions about whether to explain yourself, or just push through because it seems easier that way.

How can I manage my energy at work?

You can’t always predict when symptoms will flare, and you can’t control how your body responds on a given day. If your energy works like a budget, the aim isn’t to have more of it, but to spend what you have more carefully. Small changes to how you plan and pace your working day can make a noticeable difference, and there are various strategies you can put in place, such as:

• Build buffers into your day. Leave gaps between meetings and tasks that need a lot of energy and focus. Even a few minutes making a cup of tea, stepping outside, or sitting quietly with your eyes closed can help you reset.
• Plan your week around your energy. Where you can, do your most demanding work on your better days or at your better times of day, or when you’ll be in the working environment that suits you best. And have a lighter plan B ready for the days when your body has other ideas.
• Protect your lunch break. It can be tempting to work through it to make up for a slower morning, but a proper break in the middle of the day, away from your desk, screens and noise, gives your body and mind a chance to recover before the afternoon.
• Cut down on small decisions. Every decision takes a bit of mental energy. Having a few go-to lunches you genuinely look forward to, a set of work outfits on rotation, or templates for emails you send often can free up energy for the work that matters.
• Notice your early warning signs and act on them. Everyone’s signs are different, and they can be physical, mental or emotional. Acting early, by taking a break, switching to a lighter task or finishing on time, can help you avoid a crash rather than pushing through.

If you have very little say over your schedule, that doesn’t mean these won’t work for you. It may just mean starting smaller, or asking for some flexibility, which I’ll come to in the next section.

How do I explain my condition at work and ask for reasonable adjustments?

By law, you don’t have to tell your employer about a disability. It’s your decision whether to share it, who you tell and how much you say.¹

That said, telling your employer can bring real benefits. Once they know, they have a legal responsibility to support you, and according to Acas, “employers should do all they reasonably can to create an environment where people feel safe and comfortable to talk about disability”.¹

There can also be a safety reason for telling people. For some conditions, the people around you knowing what to do could make a real difference in an emergency. For example, I have adrenal insufficiency, and if I became seriously unwell at work, I’d need someone I work with regularly to know where my emergency injection is and how to use it. If you have diabetes, it might mean a colleague knowing the signs of a hypo and how to help. You don’t need to tell everyone, but one or two trusted people knowing could be life-saving.

If you do decide to share, these tips may help:

• Decide who needs to know and how much. Your manager may need more detail than your wider team, for example to help you manage your workload, working hours or routine. Your employer should keep your condition confidential unless you’re happy for it to be shared.¹
• Explain the impact, not the diagnosis. People don’t need your medical history to understand what helps. Focus on what your condition means for your working day, such as needing regular breaks or finding early meetings harder.
• Use an everyday comparison. A phone battery that drains faster and takes longer to charge is easy for anyone to picture. Or you could share the spoon theory, which I explain in this article.
• Explain that symptoms come and go. They can change a lot from day to day, so a good day doesn’t mean you’re suddenly ‘better’, and a harder day isn’t a sign you’re not trying.
• Keep some things private if you want to. You don’t owe anyone the details. Something like “I’d rather not go into it, but thanks for asking” is enough.
• Have a short reply ready. If someone says “but you look fine”, you could try: “Thanks, a lot of it doesn’t show.” For unsolicited advice, “Thanks, I’ve got it in hand with my healthcare team” closes the conversation politely, without you having to debate it.

If you’re not sure where to start, a short script can help. For example something like the following could be adapted to your own words:

“I have a long-term health condition that affects my energy. You won’t always see it, and some days are better than others. If I step back from something or move a meeting, that’s why. The most helpful thing is a bit of notice before last-minute meetings, and checking in with me rather than assuming.”

If your condition affects how you work, you can also ask for reasonable adjustments. These are changes that help you do your job, such as flexible start times, some home working, extra rest breaks or a phased return after time off. Your employer is responsible for paying for them.² Acas has a free reasonable adjustment request template, and Citizens Advice has sample letters you can adapt. You may also be able to get extra support through Access to Work, a government scheme, and you don’t need a diagnosis to apply.³

How do I manage other people’s expectations?

Even when colleagues know about your condition, it can be hard for them to keep it in mind, especially on the days you look well. Expectations can build up without anyone meaning them to, including your own.

• Say no, or “not this week”, without over-explaining. A short, clear answer is enough: “I can’t take that on this week, but I could look at it on Tuesday.” Offering an alternative shows you’re still committed without stretching yourself too far.
• Agree a check-in rhythm with your manager. A short, regular catch-up means workload and priorities get talked about routinely, not only on bad days when you’re already struggling.
• Set deadlines you can meet on a harder day. Use what you know about your energy to build in some slack, so one flare doesn’t knock everything off course.
• Let go of having to prove yourself. You might feel you need to work twice as hard to show you’re not slacking, but that only drains the energy you’re trying to protect. The aim is work you can keep up over time, not proof that you can push through.

How health coaching can help

If work is taking everything you’ve got, you don’t have to figure it all out on your own. As a UKIHCA Registered Health Coach, I support adults living with chronic and invisible conditions to find a way of working that fits their energy and symptoms, one step at a time.

Many of the things in this article are exactly what we can work on together. That might be setting boundaries at work and keeping them in place, protecting your energy and your peace on busy weeks, or feeling more confident speaking up about what you need, whether that’s with your manager, your colleagues or HR.

I won’t tell you what to do. Coaching is collaborative, not prescriptive, because you know your body, your job and your workplace better than anyone. You set the agenda, and together we work out which approaches fit your circumstances, then build them into small, realistic steps you can try between sessions.

I don’t give medical, legal or employment advice. For questions about your rights at work, you can get free advice from the Acas helpline or Citizens Advice.

If you’d like to talk things through, you can book a free First Step Call with me. It’s a 30-minute, no-obligation conversation, and you’ll leave with clarity about your next step, whether or not that involves coaching.

Sources

¹ Acas, Supporting disabled people at work
² Acas, Reasonable adjustments at work
³ GOV.UK, Access to Work: eligibility