Mental health and myelofibrosis: Coping with a chronic diagnosis
Fact-checked by Living with myelofibrosis can affect more than your physical health. Questions about the future, your relationships, and your sense of control may bring new or unexpected emotional and mental health challenges.
Myelofibrosis mental health care is a crucial part of overall cancer care. In fact, taking care of your emotional and mental health is just as important as caring for your physical health. Strategies to support your mental health may include counseling, support groups, stress management techniques, or therapy.
The emotional impact of a myelofibrosis diagnosis
It’s normal for a diagnosis of myelofibrosis to bring up a lot of emotions at once, such as fear, anger, sadness, worry, or even numbness, in any combination. It can be overwhelming trying to understand what the disease means while also processing your feelings.
Coping with chronic cancer can also affect how you connect with others. You may want to talk about what is happening, or you may not feel ready yet. Both reactions are common.
Your family and friends may struggle with knowing what to say, too. It can help to let them know whether you want advice, comfort, or just someone to listen.
You don’t have to sort through all of your feelings at once. It takes time to adjust to each part of life with myelofibrosis.
Managing anxiety
For some people with myelofibrosis, anxiety can be especially intense around blood tests, imaging scans, or follow-up visits. It can happen before testing, during the wait for results, or when you’re trying to interpret what the results mean.
With myelofibrosis, ongoing monitoring can make these feelings come up again and again. The waiting period between the tests and the results can be especially stressful.
Consider the following strategies for managing anxiety:
- Schedule tests earlier in the day: This may help reduce time spent worrying beforehand.
- Ask questions ahead of time: Your care team can explain what to expect, how long testing may take, and when results may be available.
- Lean on your support network: Share your concerns with trusted friends, family members, or caregivers.
- Decide how you want results communicated: Some people prefer to view results immediately, while others wait to discuss them with a doctor.
- Plan something calming afterward: Consider calling a friend, resting, or doing an activity you enjoy.
Addressing depression and social isolation
Depression isn’t uncommon among people living with myeloproliferative neoplasms (MPNs), a group of blood cancers that includes myelofibrosis. In one large study, nearly 1 in 4 people with MPNs were at risk for depression.
Isolation or depression in MPN patients can build slowly. You may cancel plans because of persistent fatigue, feel misunderstood, or get tired of explaining your situation.
It can help to stay connected to your friends and family in ways that feel doable, such as a short call or text, or a low-pressure visit. Make it a point to do activities that you enjoy. Engaging in hobbies or activities like reading, journaling, or spending time in nature can help keep negative thoughts at bay,
Sticking to a routine, getting enough sleep, and exercising (as you are able and with your doctor’s recommendation) are also helpful lifestyle strategies to keep you feeling your best.
If sadness, hopelessness, or anxiety lasts for two weeks or more, or begins interfering with daily life, tell your healthcare team. They can connect you with counseling, mental health services, or support groups.
Mindfulness and stress reduction techniques
Mindfulness is about paying attention to the present moment without judgment. It may help reduce stress, ease anxiety, and refocus your thoughts during difficult moments.
Research shows that mindfulness and relaxation can improve coping techniques and reduce stress and anxiety. You might try these strategies:
- Slow, mindful breathing: Breathe in through your nose, then exhale slowly through your mouth.
- Grounding and sensory techniques: Name five things you can see, four things you can feel, three things you can hear, two things you can smell, and one thing you can taste.
- Guided imagery: Picture a calm place in your mind in as much detail as possible.
Finding a community: The power of support groups
Because myelofibrosis is a rare disease, you may not know anyone else living with it. That can feel isolating, even when you have caring and supportive people around you. Finding support groups can give you a place to talk with others who understand what you’re going through.
Support may come in the form of an in-person support group, online community, or a one-on-one peer program. These programs can help people share experiences, talk through emotions, feel less isolated, and access helpful resources.
Organizations that offer support resources for people living with myelofibrosis and MPNs include:
Your healthcare team may also be able to connect you with support groups, counseling resources, or peer programs for people living with blood cancers or MPNs in your area or virtually.
Myelofibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
