Working while undergoing treatment for multiple myeloma is a personal decision with several factors to consider. Some people continue to work full time or switch to a part-time schedule. Others retire early or apply for disability benefits.
Your physical ability, type of job, financial need, treatment side effects, and insurance access may all contribute to your decision to continue working, stop working, or temporarily cut back at work. Here are some factors to think about as you plan for your future during treatment.
Myeloma treatment can significantly affect your energy levels, making it difficult to keep up at work. Changes to your appetite, appearance, mood, and immune system may bring up unexpected challenges in your daily routine. Depending on your usual work environment, it may not be safe for you to go into your workplace and risk exposure to bacteria and viruses.
Socially, others may notice changes in how you look and ask probing questions that you don’t want to answer. Keep in mind that only you can decide when, how, and if you want to discuss your diagnosis at work. One way to stay in control of the conversation is thinking ahead about what you want to say. There’s nothing wrong with setting boundaries and asking others to respect your privacy.
Many people deal with nausea, vomiting, appetite changes, and other gastrointestinal problems during chemo or other myeloma treatments. Finding nutritious snacks that don’t upset your stomach can help keep your energy levels up at work. Look for sources of protein that you can tolerate. If a hot meal isn’t appealing, consider a cold snack or a meal replacement shake.
Another common myeloma issue is impaired immunity caused by low white blood cell counts. Immune system concerns can vary greatly from person to person. One member of MyMyelomaTeam shared, “I work as a narcotics agent, and I do not believe I can drive safely and go into houses that are extremely dirty with very sick people with no white blood cells.”
Another member responded, “I continue to work 30 hours a week as an RN in an outpatient oncology infusion center. I am very fortunate to have very understanding bosses. I actually work where I get treated, so it makes it easier. But the fatigue is tough!”
Having an understanding boss or manager who allows for some flexibility can make all the difference in whether you’re able to continue working. If possible, working from home or taking additional precautions can make it easier to remain on the job through chemo or radiation therapy. Ask your oncologist for a referral to a social worker or occupational therapist who can provide support and guidance to help you modify the way you work.
Discussing personal health concerns with your boss can be stressful. Although you’re not required to tell your boss about a cancer diagnosis, doing so will give you protection under the Americans With Disabilities Act (ADA). Setting up a private time to discuss your situation with your boss can open up the conversation about making reasonable accommodations and scheduling time off if you need it.
Ask your oncologist about your treatment options and what to expect from your treatment plan before speaking with your manager. This way, you can explain how your duties at work may be affected by your treatment. You may be recommended for maintenance therapy, new drugs with fewer side effects, or targeted therapy that is less taxing. Your manager will appreciate ongoing communication as your treatment progresses.
You may worry that your co-workers will treat you differently if they find out about your myeloma, but sometimes it can be helpful to let others know what’s going on. Your colleagues may serve as an unexpected support group, especially if they’ve been through similar health issues themselves or with family members. If you have someone you’d like to tell but don’t want the news to spread, be clear about your wishes from the start. You can always say that you’re dealing with some personal health issues without getting into the details if you prefer.
MyMyelomaTeam members who work in physically demanding jobs often find that they have to stop working. “I had to retire early. I physically could not do my job,” one member wrote. Others continued to do physical labor: “My whole body hurts so bad, but I just push myself.”
Recovering from multiple myeloma treatment made working too difficult for some members. “I had to retire when I was diagnosed. I had two surgeries at the time and just couldn’t work,” another member commented.
Other members found that working during treatment was a helpful distraction. “My husband worked all the time,” a spouse wrote. “It was good for him because it kept his mind busy.”
Many members continue to work despite physical limitations or bone pain because of their financial or insurance needs. One member shared, “I don’t have a spouse, so I need to work. It is a challenge every day.”
Work decisions vary greatly among individuals with myeloma. There’s no right or wrong answer that applies to everyone. Keep your health and well-being as top priorities when making your decision to help you choose the best path. If you end up dropping your original career plan, that doesn’t mean you can’t find purpose elsewhere.
“I had retired from my career and invested a large part of my retirement into a cleaning franchise, hoping to grow and sell it in seven to 10 years. I was two years in and ahead of schedule when I was diagnosed,” shared one member. “By the time it all ended, I had 10 collapsed vertebrae and two broken ribs. To say the least, between physical impairments and fatigue, I cannot run a small business the way that is needed. I sold the business for pennies on the dollar and am on full disability. I do get bored, but I am filling some of that time writing blogs and advocating for blood cancer patients.”
Looking for productive hobbies and ways to contribute your talents outside of work can help fill the void if you decide to leave your job.
Stopping work isn’t always a choice. Although there are legal protections for people with cancer, some members of MyMyelomaTeam report being let go from work because of their medical needs. “I lost my job due to being so ill and taking too much time off,” a member stated. If you believe you’re being discriminated against because of cancer, refer to the ADA to learn more about your rights.
Other members apply for Social Security disability benefits in the United States — or similar programs in other countries — to support them if they’re unable to work. One member wrote, “I am making more changes, like lowering my cost of living, so I may be able to take disability if I need to.”
Taking time off work can be essential to your quality of life and cancer care plan. Always remember that your health comes first. Everything else may have to take a back seat as you work on getting through myeloma treatment.
MyMyelomaTeam is the social network for people with myeloma and their loved ones. More than 15,000 members come together to ask questions, give advice, and share their stories with others who understand life with myeloma.
Is myeloma treatment putting a strain on your job? What advice do you have for others? Share your experience in the comments below, or start a conversation by posting on MyMyelomaTeam.