People with all types of cancer may choose to continue working through cancer treatment because it gives them a sense of purpose and normalcy, and may even serve as a source of emotional support. However, it’s not unusual for the side effects of cancer treatment to become a barrier to full-time employment. As you navigate your cancer journey, it’s essential to remain mindful of whether work is adding to or detracting from your quality of life.
Exploring different treatment options with your oncologist, like targeted therapy, can make it easier to maintain your usual lifestyle. Here are some of the employment struggles — and solutions — that MyLeukemiaTeam members with different types of leukemia have experienced.
A leukemia diagnosis can turn your world upside down. Even the most dedicated workers may find themselves needing to rethink their career choice to get a better work-life balance. One member of MyLeukemiaTeam said, “I wish I could go back to work. Some days I’ll feel fine, but the next I cannot do anything, even think.”
Another member agreed: “It’s so true. Some days, I run around to get things done. Then, other days, it’s an effort to get out of bed. I get tired of napping but am too fatigued to do much else.”
The ups and downs of leukemia can make it hard to decide what to do about work. Deciding between temporary time off or a complete career change isn’t always easy. You may end up making several changes before settling on an arrangement that feels right. If you’re returning to work after taking time off for treatment, collaborate with your health care team to come up with a plan that includes any necessary accommodations to help you be successful at work. For instance, radiation therapy and chemo are known to cause fatigue. You may want to request shorter work hours, additional breaks, or to start your day an hour later to allow sufficient time to rest.
When possible, working from home can ease some of the burdens of staying fully employed. You won’t need to spend as much time and energy getting ready for work, socializing with co-workers, and commuting. Those few extra minutes in the morning to sleep in or relax can make all the difference in your stamina for the day ahead. In addition, if you’re concerned about how blood cancer has affected your immune system, working from home can alleviate worries about an impaired ability to fight infections.
Many members of MyLeukemiaTeam have mentioned their desire or plans to work from home. “I couldn’t return to work because of the side effects, but I stay on the computer a lot looking for some work where I can work from home,” one wrote. Another said, “I've been out of work since the end of June. They keep asking when I’m coming back (even if part-time), but I’m still going through chemo and am on short-term disability. I don’t want to rush my healing, but if I do return, I can work from home.”
Telecommuting makes work easier in some respects, but it’s important to set boundaries and unplug when your day is over. If working remotely makes you feel like you’re always on the clock, it can end up being more stressful than going into your job. Only you can decide what type of work arrangement is best for you. Remaining flexible and being willing to change your plans as needed are necessary when you have leukemia.
Even if you don’t want them to, relationships at work may change as your co-workers learn about your diagnosis. Some people will reach out to show support, while the responses from others may be disappointing.
One member of MyLeukemiaTeam described her experience this way:
“I have been in complete remission since 1986, but I had to quit teaching right after the diagnosis and was not allowed to teach for over a year after my transplant. I remember going back to an elementary school in a major city. The principal would not come near me. At lunch, if there was a seat beside me, she would not sit there. Others were the same way. Even now, if I get sick, many people treat me differently. Sometimes people change, but sometimes they don’t.”
Fortunately, MyLeukemiaTeam is a place where you can share with people who relate and empathize. Another member responded to the elementary school teacher’s post and wrote: “That is so sad. Just because you may get sick, they treat you like you have the plague. They wouldn’t like it if the shoe was on the other foot. You did not ask for the disease, but people can make you think that you will give it to them even though it’s not contagious. People can be so ignorant.
“Here,” the member continued, “we don’t judge you. We understand and feel for you, wish you all the best, and full remission. But even if remission doesn’t happen, we are here for you to tell us how you are feeling and what you are going through. I know it is hard not to take what others do personally, but try to remember that you don’t wish this on anyone, and that includes them. Heaven forbid, if they happen to get something that others don’t understand. God bless you, take care, and stay safe.”
Continuing to work when you have cancer isn’t always possible, and that’s OK. Putting your health first means knowing when to say no. Depending on your situation, you may qualify for disability benefits during this challenging time. Everyone needs help sometimes, so don’t hesitate to look into the resources that may be available to you.
Some members of MyLeukemiaTeam are on disability and have found it helpful. “I feel blessed that I am out on disability during this whole ordeal,” one member said. “I can’t imagine being able to get enough energy to go to work when I can’t even do one-third of the daily requirements.”
“I, too, am on disability,” another member added. “Thank God! I can’t imagine the strength it takes to have to work while fighting the big fight.”
Despite potential assistance from disability, financial concerns are often unavoidable for individuals with cancer and their family members. If your spouse has to take time off work to act as a caregiver, or if you have children who require childcare, juggling your expenses can quickly become overwhelming.
Studies show that younger cancer survivors are more vulnerable to the lasting financial impacts of cancer treatment. But fear of losing employer-sponsored health insurance and concerns about high prescription costs should not be deciding factors in your choice to continue working, no matter your age. Various public programs are available to assist with the high cost of cancer care. You may be able to qualify for low-cost coverage through your state marketplace. Ask your health care team how you can speak with a social worker at the hospital. And call your state department of insurance for more resources to manage your medical expenses.
MyLeukemiaTeam is the social network for people with leukemia and their loved ones. On MyLeukemiaTeam, more than 10,000 members come together to ask questions, give advice, and share their stories with others who understand life with leukemia.
Are you living with leukemia? How has it affected your work life? Share your experience in the comments below, or start a conversation by posting on your Activities page.