Working life after a life-changing diagnosis

Working life after a life-changing diagnosis

A life-changing diagnosis can bring questions about work at a time when there is already a great deal to take in. Deciding what to share, managing appointments and wondering how colleagues will respond can sit alongside concerns about health, money and the future. Whether you are experiencing this yourself, supporting a colleague or helping shape an employee network, there is value in understanding how different those needs can be.

Work can mean different things to different people

For some people, work offers familiar routines, connection and a part of life that still feels their own. For others, stepping away is necessary, or their relationship with work changes.

In an account published by Macmillan Cancer Support, Helen describes how continuing to work during breast cancer treatment helped her feel wanted and gave her something else to concentrate on. She later took early retirement because of ill health. Her experience shows how the place work holds in someone’s life can change over time.

There should be room for different choices, without treating someone’s ability to keep working as a measure of their determination. Decisions about working during illness or treatment need to reflect individual circumstances and advice from the person’s healthcare team.

Deciding what to share

Telling people at work can feel like another difficult task. You may still be trying to understand the diagnosis yourself, and you might not have answers to the questions others will ask.

Cherelle, writing for the MS Society, recalls being frightened about telling her employer when she was newly diagnosed with multiple sclerosis. She did not yet understand the condition well enough to explain it confidently. Her account highlights how much can be expected of someone who is still processing the news.

It may help to start with one appropriate person, such as your manager or an HR contact, and prepare a few points about what is affecting work. Discuss what information they need to arrange support, who else may need to know and how you would like colleagues to be told. Macmillan’s guidance also recognises that speaking to an employer can open a conversation about changes that help someone continue working or return.

“Words you could use
“I’m still taking this in, so I don’t have all the answers yet. I’d like to talk about what I need at work for now and agree what can be shared with others.”

You can also set boundaries around everyday conversations:

““I appreciate you asking. I’d rather not talk about my health today, but it would be lovely to catch up about something else.”

Make support specific enough to help

It can be difficult to answer “What do you need?” when you have never been in this situation before. Start with the parts of the working day that are becoming difficult and explore possible changes together.

In her published account, Lindsay describes arranging later calls on the days after chemotherapy and having colleagues cover meetings when she was unavailable. These were practical arrangements that fitted her treatment and her role; they were not a template for everyone with cancer.

Useful questions to consider include:

• Are there appointments or periods of absence to plan around?
• Would different hours, breaks or working arrangements help?
• Which tasks need cover, and which would you like to keep?
• Who can explain the available leave, pay and support options?
• When should you review what has been agreed?

HR or occupational health, where available, can help explore arrangements alongside relevant healthcare advice. You do not need to predict every future need before having an initial conversation.

If a colleague tells you about their diagnosis

You may worry about saying the wrong thing. Begin by listening and acknowledging what they have shared, without trying to explain the illness, recommend treatments or predict what will happen.

“A thoughtful response
“Thank you for telling me. Would you like to talk, or would practical help be more useful at the moment?”

Offer something concrete where you can: covering a meeting, sending notes or taking on an agreed task. Check before acting, so your help does not remove work or opportunities the person wanted to keep.

Let them guide how often their health comes up. Continue to include them in ordinary conversations and invitations, while making it easy to decline. Respect whatever they have asked you to keep private.

Support may need to continue as circumstances change

Returning to work, looking well or reaching the end of a course of treatment should be an opportunity to review support.

Lindsay also describes colleagues being surprised that she still needed appointments after active treatment had finished. Having to explain this repeatedly made the lack of understanding particularly noticeable to her.

A useful check-in leaves room for an honest answer:

““How are the arrangements working for you now? Is there anything we need to revisit?”

Follow-through matters too. Cherelle describes occasions when employers offered support but did not put it into practice. Agreeing who will take each action, and when, can make a supportive conversation more useful.

The role employee networks can play

An employee resource group can create opportunities to hear different experiences and discuss the assumptions people encounter at work. It can also help colleagues find information about existing organisational support.

Participation should always be optional. Nobody should need to tell their story publicly to receive help, and a network should avoid placing the responsibility for educating everyone on the person who has been diagnosed.

For a network discussion, you could explore:

• How can we offer support without making assumptions?
• What makes it easier to ask for help privately?
• How can someone stay connected during absence without feeling pressure to work?
• Are we keeping development opportunities open to people whose circumstances have changed?

Personal accounts can help a conversation feel more human, provided they are recognised as individual experiences rather than expectations for others.

How Employees Matter can help

Employees Matter brings expert insight and lived experience into workplace conversations through informative webinars, seminars and virtual sessions. We help organisations and employee networks explore sensitive subjects, build understanding and consider how colleagues can support one another in everyday working life.

Whether you are planning an event about life-changing diagnoses, long-term conditions or the wider impact of illness, we can help you choose a session that reflects your audience.

To discuss a session for your organisation or network, contact info@employeesmatter.co.uk.