Language / La langue: 
You are here:   Cancer and Work

Survivors Communication and teamwork Who gets to know: How to exercise your power of “disclosure”

Who gets to know: How to exercise your power of “disclosure”

Dr. Margaret Oldfield, M.E.Des., PhD

Dr. Margaret Oldfield is a social scientist and the postdoctoral scholar on the project. Her pre-doctoral career encompassed the fields of social policy, education, employment, disability rights, women’s issues, and community health. She received a PhD in Rehabilitation Science from University of Toronto in 2015 and a Certificate of Advanced Training in Qualitative Health Research Methodology. Her dissertation explored how women with fibromyalgia, a chronic illness, stayed at work. Dr. Oldfield’s research interests include workplace disclosure, discrimination against employees with chronic illnesses, factors other than illness that push these employees out of the workforce, and alternatives to workplace accommodations that do not require disclosing difference. She also is a writer, an academic editor at Ryerson University, and a collaborator with the Centre for Research on Work Disability Policy.

View all Cancer and Work team members

Dr. Mary Stergiou-Kita

Dr. Mary Stergiou-Kita is an Assistant Professor in the Department of Occupational Science and Occupational Therapy, University of Toronto, an Adjunct Scientist at the Institute of Work & Health, and an Affiliate Scientist at the Toronto Rehabilitation Institute, University Health Network. Dr. Stergiou-Kita’s program of research focuses on developing tools that enhance work re-integration across populations, including cancer. She aims to bridge health and employment contexts, develop strategies that enhance workplace supports, clinical practice, and improve work outcomes. Dr. Stergiou-Kita has developed best-practice recommendations for determining work readiness and conducted research in the areas of workplace accommodations, workplace stigma, discrimination, and disclosure following cancer.

View all Cancer and Work team members

Ms. Maureen Parkinson, Vocational Rehabilitation Counsellor, M.Ed. C.C.R.C, BC Cancer

Ms. Maureen Parkinson is the province-wide vocational rehabilitation counsellor at the BC Cancer Agency. She has also been vocational rehabilitation counsellor at a public rehabilitation hospital and vocational rehabilitation consultant to insurance companies and the court system. She has instructed and facilitated Service-Canada-funded programs on job searching and career exploration. Ms. Parkinson has a Masters in Counselling Psychology, is a Canadian Certified Rehabilitation Counsellor, and completed the Certified Return to Work Coordinator Program through the National Institute for Disability Management and Research. She has developed return-to-work and job-search seminars for cancer patients and created the guidebook “Cancer and Returning to Work: A Practical Guide for Cancer Patients” as well as on-line articles about returning to work and school. She also co-authored a paper commissioned by the Canadian Association of Psychosocial Oncology, “Cancer and Work: A Canadian Perspective”.

View all Cancer and Work team members

Dr. Christine Maheu, RN, PhD

Dr. Christine Maheu is an Associate Professor in the Ingram School of Nursing, Faculty of Medicine, McGill University. Dr. Maheu is also an Affiliate Scientist at the University Health Network and the University of Toronto. At McGill University, she teaches research methods, supervises graduate students (masters, doctoral, post-doctoral), mentors practicing nurses and students in research, and conducts research in English and French. She has held research awards with the Canadian Institutes of Health Research, the Canadian Cancer Society, and the Canadian Partnership Against Cancer. These awards funded her research in psychosocial oncology, which focuses on developing and testing psychosocial interventions or measurements tools for various cancer populations. Additionally, in partnership with Ipsos Canada and funded by the Canadian Partnership Against Cancer, she is co-leading a nationwide survey of the needs of cancer patients for transition care from the end of their treatment to three years after their diagnosis. Dr. Maheu received awards for excellence in nursing research (2013, 2015, 2016) from Ovarian Cancer Canada, the Canadian Association of Nurses in Oncology, and the Quebec Association of Nurses in Oncology.

View all Cancer and Work team members

Ella Forbes-Chilibeck, lawyer, Ravenlaw

Ms. Ella Forbes-Chilibeck, of Forbes Chilibeck Employment Law, advises clients on all the areas of employment law, human rights, and disability-related issues. She received a BSc. (Honours) from University of Victoria in 1989 and an LL.B Cum Laude from University of Ottawa in 2005. She ‎was called to the Bar in Ontario in 2006 and Nunavut in 2010‎. ‎Ms. Forbes-Chilibeck is a certified Workplace Investigator. Before attending law school, she enjoyed a successful career as a behavioural consultant, having received a diploma in Rehabilitation from then Grant McEwan Community College in 1983.

View all advisory board members and expert writers

Deciding whether to share with the people at your work about your cancer is an individual decision. From the start, know that you do not have to disclose this information. For example, when you return to work after treatment, you may choose to say only that you had a health issue to attend to. However, disclosing or not has its pros and cons. To learn more on disclosure, read this article, written by some members of the team.

Portions are based on the Disclosing Your Cancer Experience at Work (PDF) by Maureen Parkinson, Vocational Rehabilitation Counsellor, BC Cancer Agency Vancouver. Originally published in Abreast in the West, Spring 2005.

Deciding whether to disclose your cancer or any details related to your illness is a power you can exercise depending on your personal needs, be they specific accommodations at work or simply emotional support.

For example, if you need time off work owing to your illness, you do not have to disclose your cancer to the employer; however, you do have an obligation to provide fundamental information to support your request. You need only provide a note from your doctor confirming that you are unable to work for medical reasons and unable to perform the regular duties of your job, noting the length of the absence, if possible. Again, your doctor is not obliged to disclose the nature of your diagnosis—only that your reason for not being able to work is health related.

When you do return to work, however, the employer has the right to be informed of any work restrictions or functional limitations you may experience. Here you may very well be asked to provide some background or explanation for these requirements. But what you say beyond what is absolutely necessary will depend on your work environment and culture, your relationship with supervisors and fellow employees, and your level of comfort as well as your read of the situation. Talking about your cancer in the workplace may benefit you or it may not. Only you can weigh the benefits against the pitfalls and decide how best to exercise your power of disclosure.1 The following guide presents some benefits and drawbacks, as well as resources and strategies to help you make the right choices.

The power of disclosure: Benefits

Getting the emotional support you need. There may be times when it feels important to tell someone at work about your illness or its effects. Sharing with close colleagues allows them to express their concern and provide emotional support, especially if they have also coped with an illness or disability themselves. They will likely understand that the effects of cancer and treatment are not all readily visible—symptoms like general fatigue, brain fog or other unpredictable effects. Disclosure may also inform your co-workers who have not been in your situation, help them understand your challenges, and show them how to be allies in your successful return to work.

Getting the accommodations you need. Keeping your employer or supervisors in the loop will often be appreciated and help them to better understand their obligations regarding workplace accommodations. Such adjustments may include flexible scheduling, holding a position open, or other specific accommodations regarding safety or productivity. Again, the extent of your disclosure is up to you but if you do not request and provide information regarding your need for accommodation, your employer may not be required to accommodate your functional limitations. Your supervisor does not need to know the specific details of your cancer – only how your illness and its treatment may affect your ability to do your job. By law, if they knew or ought to have known of the need for accommodation, an employer must reasonably accommodate employees with a disability, unless doing so causes undue hardship in the workplace.

Getting support from your employer. An employer in your corner can help get your message across to your co-workers and ensure their cooperation, while sharing personal information only with your consent. Your employer may also be a good sounding board in deciding how much you want to share with others. An employer or supervisor can help you work out how you would like to be welcomed back to the workplace and prepare you for any questions you might be asked.

Avoiding misunderstandings with co-workers. Bringing your co-workers into the loop may help avoid misunderstandings or rumours that might otherwise arise when they take note of your absences, or your changes in mood and behaviour. As well, not taking others into your confidence may lead you to put up a false front. You may struggle to maintain a false degree of self-composure that will only add to your stress.2 Sharing your situation with others may help relieve that stress.1

Showing your co-workers how they can support you. Once your co-workers understand the challenges you face, you will be in a better position to explain what help you need, and they will be in a better position to understand how they can support you. Not only will you be more likely to be able to arrange the accommodations you require, but everyone will be put more at ease.

The power of disclosure: Pitfalls

Unresponsive workplace. There is the risk that you may encounter an unresponsive workplace. If you sense that your co-workers are unsupportive or have a history of being unsupportive of those with illness or disability, you may consider whether disclosure will be helpful.

Risk of discrimination. There is also the risk of workplace discrimination (being treated unfairly because of difference, being monitored more closely than other employees, etc.) and concern that this may lead to demotion or even dismissal.3 Supervisors and colleagues may not realize that over 63% of Canadians diagnosed with cancer will survive at least 5 years after their diagnosis,4, and 62% return to work.5

Possible loss of privacy. There may be concerns regarding loss of privacy. You may worry that you will be unfairly compared with other survivors who perhaps recovered more quickly.1 You may be concerned that you will be seen differently by your co-workers or be treated differently. You may want to avoid unsolicited, unwanted or unhelpful advice about how to get better. If you have any of these concerns, the best defence is to carefully identify how much information you wish to share and with whom, and to limit your disclosure to only what is necessary.6

The power of disclosure: Resources

A trusted co-worker. Perhaps you have already found a co-worker who has been through a serious illness, someone who “gets it” and who can share their experience with disclosure and its consequences.2 This is likely the most comfortable starting point for practicing how to explain your situation, using their feedback and advice as a guide to how to approach the subject with others. Note that not all workplace disclosures are equal, that some illnesses or injuries can be more difficult to explain than others, and that much depends on the relationships you have with your co-workers.

A union representative. If you are in a union, your steward may have previous experience with workplace disclosures and may be able to offer specific advice. They will also be able to inform you of your rights, including those concerning privacy and rights under the collective agreement. What’s more, they will advocate on your behalf with your supervisor or department of human resources.

Workplace or insurance disability specialists. Your occupational health nurse, disability manager or insurance consultant at your workplace may also have valuable perspectives or recommendations.

Human resources representative. Human resources staff can likely inform you of your employer’s responsibilities regarding privacy, accommodation for disability and non-discrimination, and are in a key position to coach your supervisor accordingly.

Human rights advocacy groups, legal counsel. Should you feel that your workplace concerns are not being addressed or that you are being discriminated against, it may be helpful to explore your provincial human rights organization or even contact a lawyer. Professional legal counselling will help you clarify the issues and perhaps lead you to seek remedies.

Counselling support at your cancer hospital or in the community. Counselling may help you separate unfounded fears from real concerns about returning to the workplace. You may also benefit from sharing experiences and ideas with other patients.

Other cancer survivors among your friends, family and others. It’s very likely that you will recall or discover friends, family members or even strangers that you come to meet who have stories similar to your own. Hearing their experiences may be not only very useful but timely.

The power of disclosure: Strategies and checklist

Assessing the situation. Whether and how much to disclose depends on many factors, including your needs for accommodation or safety at the workplace, your concern for privacy, and your level of trust with employers and co-workers.7 You will need to consider what you need or want to disclose, how to go about it, and to whom and to what degree of detail you would like to disclose. Your disclosures will change with the circumstances. At times, you may need to explain not readily apparent and even invisible challenges that require accommodation, such as fatigue, cognitive impairment, chronic pain or psychological distress. You may also want to explain visible effects such as hair loss, loss of limbs or extreme weight loss. Every disclosure is context specific following the progress of your cancer and its treatment.

Timing. If the stress of diagnosis is impacting your work, or if cancer or its treatment affects your ability to do your job or poses a safety risk, it may be beneficial to alert your supervisor. (Read our article on human rights.) You may choose to disclose when you need to take time off for cancer treatment or medical appointments, or when treatment changes your appearance or affects your performance, or at any point when you begin to notice challenges that affect your work.

Method. The exact method for talking about your illness or its impact at work is a very personal decision. You may prefer to speak face to face, by telephone, or by having a third person act on your behalf. Before you proceed, however, it’s important to be clear on precisely what it is you would like to communicate.7 Again, you do not need to give everyone every detail of your situation—only details that are necessary and are consistent with your level of trust.

How to approach your employer. It’s important to keep your employer properly informed and in the timely manner already mentioned. If you are taking time off, your employer needs a medical note from your doctor confirming that you have a medical condition affecting your ability to work, estimating how much time you will need off or providing a future date for reassessment. While what you disclose of your illness and its treatment is at your discretion, you do need to inform your employer of any limitations you may have and of the accommodations you may require. These requests can be communicated in a positive way. For example, “I get more tired now and require rest breaks. This helps me manage my energy so I can be the most productive.” As already noted in previous sections of this guide, your aim is not only to secure the accommodations and understanding you need but also to enlist your employer as an ally in communicating to your co-workers and advocating on your behalf.

How to approach your co-workers. Again, it will be natural to begin with those co-workers with whom you have a good relationship and who are very likely to be supportive. This helps you “test the waters” and perhaps work through some of your emotions so that you’ll be better prepared and more collected when you talk with others less close to you. For those not as close to you, employing a “need-to-know” basis may be the best principle. Co-workers with whom you work directly may need to have some background information to help with the accommodations you require. The same information may not be necessary for other co-workers with whom you do not work as closely. Again, you have no blanket obligation to disclose your condition to all co-workers, in particular with those you don’t feel close to.7 Also, it’s important to recall that every person’s experience with cancer is different and it may be difficult for your co-workers to understand what you’re going through. Credit: Parkinson, Maureen. (2014). Cancer and returning to work: A practical guide for cancer patients (2nd ed.). Vancouver: BC Cancer Agency] At times you may need to be a little diplomatic. If you feel you need to disclose to some degree, perhaps out of politeness, keep your explanations brief, sticking to how your co-workers may be affected. If on the other hand you don’t want to discuss your cancer, you might say, “Thank you so much for inquiring about my situation, your support means a lot. My focus now is on getting back to work and putting my illness behind me, so do you mind if we don’t talk about it right now?”1 Finally, if you do feel that you’re facing discrimination from your co-workers, your first resort should be to speak with your employer or supervisor who has a responsibility to address these concerns. See this link for a resource dealing with these issues.1

Checklist: Should you disclose?

Download this checklist as a PDF file

Need for accommodation and safety risks

  • Will you need changes to your job or worksite so that you can remain productive?
  • Will safety be a concern if you do not obtain certain accommodations?

Workplace culture

  • How have other employees been treated in the past when they revealed illness or difficulties with work because of it?
  • How is your disclosure likely to be received in your workplace?
  • Is your workplace friendly and close-knit or more formal and business-focused?
  • Are differences among employees celebrated?
  • Are employees with disabilities respected and fully included?
  • Do you find that employees tend to make fun of people with illnesses or disabilities?
  • What kinds of relationships do you have with your co-workers?
  • Were there any tensions in these relationships before you were diagnosed with cancer?
  • Who do you feel you can trust with personal matters; who will not gossip?
  • Is your relationship with your manager supportive and respectful?
  • If management changed, would the relationship with your new supervisor also be supportive and respectful?

Workplace policies

  • Does your workplace have established policies and practices for helping ill or injured workers return to work?
  • Does your workplace have an accommodation policy?
  • Does your workplace have a diversity policy?

Your preferences

  • Do you prefer to keep personal matters private at work?
  • Do you feel that sharing personal information with fellow employees is best?
  • Do you feel comfortable talking about your situation?

Look for more things to consider in this blog post. Please note that this post refers to American laws that do not apply to Canadians.