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Cancer & Resilience in the Workplace: an Interview with Alyssa Burkus

Alyssa Burkus is the Head of Learning Strategy at Actionable, the founder of ShiftWisdom, a cancer survivor, a brilliant and hilarious colleague, and a dear friend of mine. I’ve learned so much from watching her navigate her lymphoma diagnosis, treatment, and recovery  –  about what a bad ass she is, about lymphoma, and about what to do (and what not to do) to support a colleague with cancer.

She and I have had lots of amazing discussions over the years about change, learning, and resilience in the workplace, but I’ve been particularly fascinated by the many parallels that Alyssa has drawn between these topics and her most recent experience with cancer. I wanted to invite you to share in that conversation.

Alyssa, for the sake of readers, can you share your cancer story?

I’ve been living with cancer for 17 years, after first being diagnosed in 2001 with a slow-growing, incurable form of lymphoma (fNHL) that I knew would require treatment from time-to-time. It was tough for lots of reasons, but in part because I was young, newly married, and none of my friends at that point had any personal experience with cancer.

I had 6 months of chemotherapy in 2002, and went through treatment several times over the years. In July of last year, I was diagnosed with a second, more aggressive, form of lymphoma (DLBCL) which was unexpected (at least to me). Unlike the first kind, which could be monitored until treatment was needed, this one required immediate and intensive treatment. I had 5 months of chemotherapy (a 5-drug cocktail), and then had a stem cell transplant in December, which involved harvesting my stem cells, freezing them, and then receiving high doses of chemo before the stem cells were returned to me. It was fascinating to be my own drug manufacturer, as the stem cells helped my body heal from the chemo, but recovery was tough.

I worked part-time through chemo, but ended taking about 5 months off for the transplant. Everyone at Actionable works remotely, so that made it easier for me to work during treatment and I was also able to return to work sooner, as I didn’t need to use up energy to commute, or risk getting exposed to germs.

I had a clean scan in April (woohoo!) and continue to be monitored closely through my recovery.

Thinking about your most recent experience with lymphoma, your subsequent treatment and ongoing recovery, what were some of the unhelpful reactions that people had?

Oh boy. So. Many. Things. I really think I have heard it all.

Let me preface all of this by saying, I know that for the most part, these comments and questions were genuinely well-intended. So, if you’re reading this and you know you’ve said this to me or other people with cancer, don’t worry. Just consider whether you want to say them again in the future.

Ok, here we go.

“I read on the internet/watched a Netflix video/saw a Facebook post/heard about a pseudo-medical book that says <any random food> can cure cancer. My sister’s-cousin’s-best-friend’s-daughter says it cured her <random type of illness>.” 

This comment comes up in many forms. Keto diet, lemons, coffee enemas, twig tea, kale juice – the list is endless. By and large, these diets are unhelpful at best, and dangerous at worst. In some cases, people going through treatment are struggling with what to eat because of side effects like nausea, making it almost impossible to add these foods but feeling huge amounts of pressure from well-meaning people that they should be doing more to fight their illness. The “solution” is often based on anecdotal stories of people who believed they were healed, not on any research science, so it’s mostly bunk.

I even had books delivered to my door, with people presuming that I have zero understanding of nutrition, and an interest in trying an extreme diet that could kill me. Neither of these things are true. I will admit I’ve tried some different diets over the years, but ask first before offering information.

(The above typically followed up with) “Have you cut out all sugar? It likely caused your cancer.”

For years, I wondered what I might have done to cause my cancer, and recently, what could have triggered such an aggressive recurrence. People don’t need to be reminded that factors in their lifestyle may have contributed to their illness. They’re already carrying around some guilt, so don’t add to their burden. Plus, as noted above, there’s little scientific proof that this is the case.

“Oh, lymphoma? That’s a tough one. My uncle/grandmother/cousin died of lymphoma. Tragic.”

I can’t count the number of times I have heard this comment. For the love of God, why on EARTH do people say this? I guarantee you, every cancer patient is already worrying about treatments not working, and doesn’t need your real-world example. Don’t remind people of the tough dark side of their illness.

What’s your prognosis? Are you going to die?

I heard this verbatim more than once. You might be wondering this, but don’t ask. Just don’t.

“The most important thing is to be positive.”

Being told to be positive makes me cranky immediately. Yes, I know that having a positive mindset can greatly influence outcomes in almost any scenario. I don’t need to be reminded of it. Fuck off. It feels dismissive and patronizing.

By encouraging the person to be positive, you’re also eliminating the ability for them to share anything they’re struggling with or trying to process. Ask instead “what has been most helpful to you through your treatment?” opens the door for a much more meaningful conversation.

There are many, many more examples but these were the most common themes.

(Wow, that was very cathartic. Thank you!)

With respect to work, what was helpful that others could learn from if an employee/ colleague is dealing with health challenges?

I have been fortunate to work in companies where people were incredibly supportive to me during my illness. In my case, I decided to be completely open about what was happening, and both times, shared my news with my bosses and colleagues almost immediately. I know not everyone works in companies where they feel comfortable doing this (which must be awful for them at times like this), but it meant that I could be open about side effects and ask for help when I needed it. If you are in a company where sharing this news would have serious career impacts, the first step would be to figure out how to change that, particularly if you are in HR or a leadership role.

I often had colleagues ask about how I was feeling, and if I needed backfill help with any of my projects. When I switched to part-time last summer, in the midst of a number of significant projects I was managing, I was able to work through the list with my boss and figure out how to shift some of the work to other people. I never felt that I was being pushed out of the way.

I would encourage employers to offer flexibility to the extent that they can, and be very specific about what they are offering. Saying “this means we understand if early meetings will be a challenge, or if you need to work from home more often, including as much as full-time if needed” is much more helpful than “we’ll try to be flexible.” Make sure the manager involved as well, to give guidance on what those parameters are, so everyone is on the same page.

There is information overload when someone is diagnosed with a new illness, and it gets compounded when researching benefits. Explaining early on about the policy and process for LOA and whether STD/LTD or if government income replacement programs are available can be incredibly helpful. If you are the employee’s line manager, take time to understand these policies yourself, don’t just defer to HR to handle it.

Let the employee take the lead on how much to talk about their illness at work. If they have been open about it, don’t let it be the proverbial elephant in the room. Ask “how are things today?” gives more specific parameters and provides less pressure for a full update. Jane, when you told me that I could be honest with you and rant if needed, I don’t know if you knew what you were setting yourself up for, but it was amazingly freeing to be able to share with you some of the challenges I was facing and not always put on a brave face.

What was particularly difficult for you that others could learn from if an employee/ colleague is dealing with health challenges?

Despite having lived with cancer for so much of my life, I was shocked at how difficult this most recent diagnosis was for me. Certainly, being older meant the treatment took a tougher toll on my body, but I also was mad at myself for not doing more to build up my personal resilience in the years leading up to it. There was a huge list of side effects I struggled with – nausea, fatigue, joint and muscle pain, numbness in my hands and feet, brain fog … you get the idea.

As mentioned, I was lucky to have lots of help when reducing my workload, but it was tough to step back from work I loved and let go of some of my projects. One of the joys of my work has been writing articles, but the side effects from treatment made it almost impossible to write anything coherent.

I stumbled across my “Goals for 2017” list in October last year, and it set me into a tailspin, knowing how little would be accomplished. My entire life was put on a shelf for almost a year, and I am coming to terms with knowing I’ll never get that time back.

Recovery to full health has also taken much longer than I expected. As someone who likes to plan everything, this has been a huge challenge! Fatigue and lingering brain fog has meant creating new templates and tricks to stay on track. I’ve also had to be more realistic about my limitations, which has been a tough adjustment.

If you have an employee or colleague being treated for a serious illness, be mindful of these challenges and consider if there are ways you can help.

Sheryl Sandberg has shared her point of view that saying “Let me know what I can do” or “How can we support you?” to someone who is going through a difficult time is unhelpful as it puts the burden on them while they are struggling, and they may simply not be prepared to ask for what they need, or genuinely not know. What’s your take on that? And if you agree, what is potentially a more helpful approach?

I agree 100% that saying “let me know what I can do” is a waste of breath. It’s well-intended, and can feel like an easy way to end a difficult conversation, but generally comes across as empty and insincere. STOP DOING THIS! If you are unable to help but need a way to end the conversation, say instead “I am sorry this is happening to you. I wish there was something I could say or do that could take away this pain for you and your family.” If you are in a position to be a sounding board if the person needs to talk to someone, let them know they can reach out to you.

Vague offers of help leave the ill person unsure about what the nature of your help might be. Are you offering to bring meals, do laundry, take kids to the movies, rub their feet, or pay their bills? Having ideas as a starting point of what you have in mind gives the ill person a sense of the parameters of your offer. And I agree with Sheryl’s comment that often the person might not be able to articulate their needs. The range of help needed is vast, and it’s possible they won’t always know what might be helpful.

If you are genuine in wanting to help, think specifically about what you can do and offer it. Your ability to help might also be based on proximity – both geographically and emotionally. If you are thinking about offering a meal, consider the process for getting it to them, and whether that’s easy or not. (Pro tip: consider bringing something other than lasagna or banana bread.) Try to avoid scenarios where the burden is on the person to be available at a specific time for delivery, and ask ahead if there are any dietary considerations you should respect (many treatments have difficult side effects, or there may be allergies in the family).

Google (that place with all the answers!) can give you tons of examples, small and large, for ways to help people who are going through cancer.

If your colleague has shared the nature of their illness (not everyone will want to do this), do your own homework. Find out more about the disease itself, the side effects of treatment, or ask the person if they’d be willing to share more details, and listen to their answers. Keep track of their treatment dates in your calendar, and say “I think you said your next treatment is Thursday? How are you feeling about that?” Don’t put the burden on the person to educate you about the ins-and-outs of their illness, or needing to remind you repeatedly about schedule details they had previously provided.

If you are part of a team where one person is ill, consider organizing a coordinated effort of help. My friends from uni collected money for a prepared meal service that was hugely helpful, and some friends organized themselves for meal delivery so we didn’t end up with 18 casseroles at once. My neighbourhood friends put together a care package where each person could choose what to contribute based on their personal interests and budget, which was lovely.

Small gestures are important too, so don’t feel you need to spend money. A card or email of support is great (particularly if the person is away from work and may be worried about being forgotten). Jane, the weekly emails you sent me with project updates and funny things you had seen on Twitter were always the highlight of my week. I felt less out of the loop, and it made such a difference to know I wasn’t forgotten.

There is a lot out there about resiliency – organizations want resilient workers, of course. But some of us might take the view that this shifts too much of the responsibility to the employee (to be better at coping with workplace stress or competing demands rather than addressing the structural issues leading to that stress or overwork). How do you define resiliency? And for you, where does the responsibility for resiliency lie?

I have been spending time through my recovery focusing on this topic. Resilience for me is the ability to recover as quickly as possible from challenges and obstacles, by having the right habits and routines that optimize your physical, mental and emotional well-being.

I believe strongly that organizations AND employees have a shared responsibility for resiliency. Leaders need to be mindful of where they are creating undue stress, and work to remove it. In my view, how we respond to employees in difficult times is the true litmus test of the degree to which your corporate values are actually influencing your workplace culture. Offering EAP or generous benefit levels for therapy does not give you carte blanche to abuse your staff. I’ve seen very mentally unhealthy organizations feel that the scales have rebalanced because they provided a wellness lunch and learn.

We need to be having conversations at work about how we’re caring for our own health and wellbeing. We need to stop pretending that it’s a private matter, and be more open about the importance of caring for our health in parallel to getting our work done. And we need to look critically at how the way we work could be contributing to physical, mental or emotional issues for employees.

Leaders need to role model health and resiliency behaviours. As soon as I heard my boss was holding time on his calendar during the workday to get to the gym, it felt like permission for me to be able to do the same. Just this week, we included time in our monthly “all hands” meeting to talk about how people are using their time to recharge over the summer, ahead of a known busy time in September. I’m hoping this is the first of many conversations we have at work about health, wellness and resilience.

Employees have to take ownership for building resiliency too. There are a myriad of elements that contribute to personal resilience at work. Not just physical and mental health, which are critical, but anything else that can optimize your ability to recover from challenges or obstacles, including keeping your skills current, being well-connected in your field, and understanding trends that may impact your work in the future.

In my case, despite feeling generally happy and healthy, I did not have consistent resiliency habits. Here I was, working in a company that gives me complete autonomy for how I set my schedule, and I was choosing work over health. I learned the hard way that I can’t continue to put myself second, and I’m working to make maintaining my health and strength a priority.

Thanks for asking these really great questions, Jane! I really enjoyed working through them, and I hope it’s helpful to those who read it.

For anyone who is dealing with a serious illness (yourself or a colleague) and has questions, please reach out to me anytime. You can find me on Twitter @alyssaburkus

Thanks to Alyssa for this great guidance. I had a few follow-up points that we chatted about on Zoom:

 

 

Recommended Reading:

Why Big Companies Squander Good Ideas – Tim Harford, Financial Times

Fascinating look at a less elegant, less well-known theory of disruption related to an organization’s inability to change its structure to accommodate and support innovation.

“Rather than talk of radical or disruptive innovations, Henderson and Clark used the term “architectural innovation”. “An architectural innovation is an innovation that changes the relationship between the pieces of the problem,” Henderson tells me. “It can be hard to perceive, because many of the pieces remain the same. But they fit together differently.”

An architectural innovation challenges an old organisation because it demands that the organisation remake itself. And who wants to do that?”

Everything You Need to Know About Territory Acknowledgements  – Stefan Kollenberg & Martin Hauck

This is a summary of a recent event I attended organized by ZJ Hadley for the People People Group (a fantastic online community of recruiters. HR professionals and others) at which Rebecca Benson, an equity consultant and student of treaties, taught us about the significance and historical context of land acknowledgements. I learned a great deal from Rebecca and am now delving more deeply into the history of indigenous peoples in this region.

This is why #MeToo hasn’t changed your workplace – and it’s HR’s fault – Emily Douglas, HRD Magazine

I was interviewed recently by HRD magazine about whether the #MeToo movement has changed our workplaces significantly. If I had written this piece I might have gone with a slightly different title (harassment is the fault of the harasser, and preventing harassment is a complex issue that can’t be solved by HR alone), but I certainly appreciate the opportunity to talk about this topic.

I’ll be speaking about this at the HR Leaders Summit in Toronto on November 14th – I hope to see you there!

Photo by Jehyun Sung on Unsplash

 

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