someone with WM
When someone you know and love is diagnosed with a rare disease like Waldenstrom's macroglobulinaemia, you might be worried about your own feelings, supporting your loved one and possibly anxious about the future.
We’ve pulled together some advice and information to help you support your friend, partner or family member as well as suggesting some ways you can also access the support you need, when you need it.
When faced with a new diagnosis and navigating medical appointments and the sometimes complex language that can be used, it can be really hard to recall everything that is said afterwards. As long as they’re happy, accompany your loved one to appointments, note down anything you want to ask prior to the appointment and don’t be afraid to ask for clearer explanations of anything you’re not sure about.
You can help by also building a relationship with their consultant haematologist and CNS, and asking for any other help that may be available to both your loved one and anyone supporting them.
It is also really important that their CNS is present at critical appointments – if your loved one isn’t sure who their CNS is, make sure you ask their doctor as the CNS is who you will have more regular contact with at times.
"Having a rare condition can feel very isolating. The charity helps you feel like you are not alone. Especially appreciated is the doctors making themselves so readily available for events and webinars.”
A WM Patient
We know that a new diagnosis of something that you’ve never heard of, especially when the word cancer is included, is a stressful time for everyone. You may be worried about saying the wrong thing or upsetting your loved one. There is no right or wrong way to do this; the most important thing is to listen and acknowledge their feelings. There is no right answer or quick fix – some things just can’t be fixed – but showing understanding and empathy is the most important thing.
It is also important to recognise that everyone deals with things in different ways; your friend or loved one may not want to talk about what’s going on just yet. Again, just show them that you understand and make clear that you’re ready to listen whenever they need you.
A diagnosis of Waldenstrom's macroglobulinaemia can be a worrying time – whether your loved one needs immediate treatment, or is put on Active Monitoring, they will have worries about blood test results, platelets and the possibility of treatment in the future.
If your loved one needs to have immediate treatment or intervention, they will be worried about how that will impact their life and the side effects of treatment, as well as how successful it might be. All of these feelings and emotions can be difficult to navigate, so it is important to keep checking in with them (but also respect their decisions on how and what they share).