Ask the Nurse: Myeloma and work 

This month, we answer some of the most common questions the Myeloma Infoline team are asked about working with myeloma.  

A myeloma diagnosis can affect every aspect of your life – including your work. Often people choose to evaluate their working life after a diagnosis. Many people continue to work for different reasons, including financial grounds, professional ambitions or maintaining a sense of self. 

This month, we answer some of the most common questions the Myeloma Infoline team are asked about working with myeloma.  

Can I still work with myeloma? 

It is a very individual decision whether you continue to work after a myeloma diagnosis.  

A myeloma diagnosis does not necessarily mean you must stop working, but it can introduce new challenges, depending on your individual circumstances.  

If you’re thinking about whether to continue working, factors to consider include the nature of your job, how your myeloma and treatment is affecting you, your family and caring circumstances, and any advice from your doctor. These factors may change over time, so it’s good to review them regularly.  

Will myeloma treatment prevent me from working? 

Some myeloma treatments are oral (taken by mouth), which means they can be taken at home. Taking oral treatment can make it easier to continue working, compared to other treatments that are administered in hospital clinics only and may require more time away from work.  

With any type of treatment, you are likely to have good periods and more challenging periods and this can affect your ability to work. You may need to take some time off and/or pace yourself more carefully.  

Talking to your healthcare team about how treatment options could affect your ability to work can help you to understand what to expect. Understanding your lifestyle and priorities can also help your doctor work with you to create a treatment plan that is specific to you and your needs.  

It is also important to think about your mental health as well as your physical health. Diagnosis, treatment and living with myeloma can all impact your mental wellbeing too. Even when you are responding well to treatment, it is normal to need a break from work sometimes. 

Do I have to tell my employer about my diagnosis? 

It is a good idea to talk to your employer about your diagnosis and what it means for you, if you feel comfortable doing so. This gives you an opportunity to discuss any support you might need and helps them to understand what you are going through.  

Although some patients worry about how their employer will respond to the news that they have myeloma, many patients find their workplace to be supportive. When your employer is aware of your situation, they are better able to make adjustments that allow you to continue working whilst balancing your health needs. 

Myeloma, disability, and the law – what are my rights? 

In law, myeloma and other cancers are considered a disability. This means you can’t be treated less favourably than people who do not have cancer. There are laws in place in the UK to protect you from discrimination in the workplace.  

If your employer knows about your diagnosis, they must make reasonable adjustments that help you to continue doing your job or return to work.  

If you feel your employer is not supporting you according to employment and disability law, you can seek free, impartial advice from Acas

What adjustments could help me at work? 

Possible adjustments will vary depending on your job, what you need and the environment you work in. For example, it might be that your employer can offer more flexible hours, allow you to work from home sometimes, or take extra precautions in the workplace to reduce your risk of picking up infections. 

It is important to remember that you can ask for reasonable adjustments to be made at any time – not only when first disclosing your diagnosis.  

You may find that your myeloma symptoms, and any side effects from treatments, change over time. Regularly reviewing your needs and adjustments can help you and your employer to make sure your arrangements are suitable. 

What do I tell my colleagues?  

You have the right to ask your employer to keep the medical information you provide confidential if you do not want other colleagues to know. 

However, sometimes your colleagues may notice changes in your appearance or be aware of adjustments to your work, such as your work schedule or adaptations to tasks. This can make people curious or concerned for you. 

It is your choice whether you tell others about your diagnosis and treatment. If you feel comfortable sharing this information, it may help your colleagues to understand what is happening and offer support if you want it.  

If you prefer not to talk about your health with your colleagues, it is ok to set boundaries and maintain your privacy.   

I am not able to work – how will I manage financially? 

If you do have to stop working, or reduce your hours, there are practical steps you can take to plan for your future. Often, having a plan can help you to feel more in control. It can be helpful to talk your finances through with an independent financial advisor or a bank manager too.  

Creating a budget can help you to manage your spending but be careful not to cut essential expenses in a way that could affect you and your health, such as not eating enough healthy food or not heating your home.  

You can find out about healthy ways to budget, manage your finances and tackle debt in Section 7 of our Infopack for living well with myeloma

Depending on your circumstances, you may be able to apply for benefits or get support paying your energy bills. Read more in our Ask the Nurse blog on cost of living support for myeloma patients and our Benefits and financial support Infosheet

You can find out more about working and living well with myeloma in our Infopack for living well with myeloma or watch our pre-recorded Digital Infoday Session, Working and living with myeloma Digital Infoday. For more information about managing your finances and coping with living costs when you have myeloma, check out our Benefits and financial support Infosheet.   

Get in touch with us through the Myeloma Infoline on 0800 980 3332 (UK) or 1800 937 773 (Ireland) or by using the Ask the Nurse email service. 

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