Adjusting to your life with CML

It’s very good news that CML is very often a long-term condition you live with, thanks to modern treatments.1 Even so, being diagnosed can feel life-changing. Even though your medicine can manage your condition for a long time,1 having CML may leave you feeling uncertain about what the future holds. It can also affect your confidence and the way you see yourself. Going for regular tests and hospital appointments can make it difficult to forget about CML, even if you want to. But the changes aren’t always negative. For some people, having a long-term condition like CML can bring new meaning and some unexpected positives into their lives.

It’s different for everyone and many people find that, on treatment, life carries on much as it did before. But some of the areas of your life that may be affected include:

Your working life

You may find you:

  • Need regular hospital appointments, which can be disruptive
  • Have to cut down on your hours
  • Lose confidence in your abilities
  • Feel guilty your colleagues have to take on more

And you may:

  • Consider what’s important and think about what you really want to be doing at work
  • Appreciate new aspects of your working life - perhaps the ability to be flexible, or your kind colleagues

Your finances

You may find you:

  • Earn less
  • Worry about money
  • Feel less in control of your finances

And you may:

  • Feel more relaxed about money and decide to spend on things you really want to do
  • Start investing in your health, for example, with a gym membership and healthy food

Your relationship

You may find you:

  • Lose confidence in your body and have a lower sex drive
  • Feel concerned and guilty about your partner
  • Find it difficult to relax and enjoy time together

And you may:

  • Feel closer than before
  • Value your partner more than ever

Your social life

You may find you:

  • Feel too tired to do a lot of the things you used to do
  • Worry about burdening your friends

And you may:

  • Find it easier to choose who you want to spend time with
  • Start trying new activities

How to manage the changes

Lots of people living with CML talk about adapting to their diagnosis. These tips may help:

  • Try chatting online to other people with CML. While everyone’s situation, experience and feelings are different, the others in the forum will understand a lot of what you’re going through. The CML Support online forum has lots of very active members who can help you feel better about your diagnosis
  • Open up to friends and family. It’s natural to worry about burdening them but if those closest to you understand what you’re finding difficult, they’re more likely to be able to give the support you need. And you can support them too
  • Talk to your healthcare team about anything that’s helped their other patients
  • Start new activities – and continue with the ones you have always done if they still bring you joy. Try not to let go of doing the things you enjoy in life, and this can include going to work, which can be a helpful distraction. This can also be an opportunity to take up new things, such as running a 10k for a CML-specific charity, or taking up a musical instrument. Often people find that a diagnosis makes them want to try new activities and meet new people
Give yourself time. It can take a while to adjust to living with CML. You’re likely to have good days and bad days. Try to make time to do things you enjoy and find relaxing – this can help you feel calmer and more positive.
  1. Jabbour et al. Patient adherence to tyrosine kinase inhibitor therapy in chronic myeloid leukemia. American Journal of Hematology, Volume 87, Issue 7, pages 687–691, July 2012, DOI: 10.1002/ajh.23180