Coping and support

Living with myelofibrosis may involve coping with pain, discomfort, uncertainty and the side effects of long-term treatments. The following steps may help ease the challenge and make you feel more comfortable and in charge of your health:

• Learn enough about your condition to feel comfortable making decisions. Myelofibrosis is fairly uncommon. To help you find accurate and trustworthy information, ask your doctor to direct you toward appropriate sources. Using these sources, find out as much as you can about myelofibrosis.

• Get support. Take this opportunity to lean on family and friends. It can be tough to talk about your diagnosis, and you'll likely get a range of reactions when you share the news. But talking about your diagnosis and passing along information about your condition can help you build a support network. So can the offers of help that often result.

  You may also benefit from joining a support group, either in your community or on the internet. A support group of people with the same or a similar diagnosis, such as a myeloproliferative disorder or another rare disease, can be a source of useful information, practical tips and encouragement.

• Explore ways to cope with the disease. If you have myelofibrosis, you may face frequent bloodwork and medical appointments and regular bone marrow exams. Some days, you may feel sick even if you don't look sick. And some days, you may just be sick of being sick.

  Try to find an activity that helps, whether it's yoga, exercise, socializing or adopting a more flexible work schedule. Talk to a counselor, therapist or oncology social worker if you need help dealing with the emotional challenges of this disease.