Managing polycythemia vera (PV) often means handling unpredictable shifts—some days bring energy for social connections, while others leave you drained by symptoms like exhaustion or headaches.
According to Naseema Gangat, MBBS, a professor of medicine and a hematologist and oncologist at Mayo Clinic, most people with PV don’t need to restrict their usual activities.
Instead, Dr. Gangat recommends paying attention to your body’s cues and slowing down when needed to avoid overexertion, as fatigue and stamina can be your guide.
Dr. Gangat also emphasizes the importance of keeping your hematocrit within the target range, as poorly controlled counts may contribute to symptoms and increase the risk of complications.
Managing Fatigue and Finding Balance
Kerry Cannity, PhD, a clinical health psychologist at SelfWorks in New York, suggests that pacing is one of the best tools you can learn when living with an ongoing health condition.
Dr. Cannity explains that people with chronic illness often fall into a difficult cycle, where they push themselves really hard when they feel good, and then crash for a couple of days or longer.
To help prevent this cycle, Dr. Cannity recommends planning for more physically active days as well as days when your body has time to rest and recover.
Set realistic expectations for yourself. Dr. Cannity advises avoiding perfectionism. Even small activities like a gentle morning stretch and a mindfulness exercise can be beneficial on a difficult day.
Disclosing Your Diagnosis to Your Employer
Before deciding whether to tell your employer about your PV diagnosis, it may help to understand your workplace rights and consider what would make you feel most supported.
Dr. Cannity recommends knowing the rules, considering legal advice, and looking for free guidance from online resources and social media communities.
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Depending on your situation, protections under the Americans with Disabilities Act may apply, and Dr. Cannity suggests considering the potential emotional impact of telling your employer about your diagnosis.
If you decide to tell your employer, you can choose how much information to share, and Dr. Cannity notes that sometimes keeping those aspects of life separate can provide a buffer for patients and a break from the concerns they are dealing with.
According to Dr. Gangat, a PV diagnosis doesn’t usually mean you need to change how you work, and most people with PV can continue working full-time and typically do not require workplace accommodations.
PV and its treatment can affect your energy, causing fatigue and reduced stamina. Dr. Gangat recommends discussing accommodations like flexible work hours, short rest breaks, and working from home with your care team if fatigue interferes with work.
The MPN community can also provide support and help you connect with people who understand what you’re going through, and Dr. Cannity encourages you to communicate openly about the kind of support you need and to kindly ask for what you need from others.
As Dr. Cannity notes, finding joy after a PV diagnosis doesn’t have to be complicated, and starting small by noticing moments that can get lost in the busyness of everyday life can help.
Support from other people can also make a difference, and Dr. Cannity suggests that support groups and encouragement from others have been shown to reduce anxiety and depression in people with cancer.
Learning about your treatment options before your next appointment can help you have a more informed conversation with your care team. Dr. Gangat explains that the main goals of PV treatment are to reduce the risk of blood clots and control symptoms.
Keeping your hematocrit below 45%, often through a procedure called phlebotomy, can lower your risk of blood clots and improve headaches and other symptoms related to blood circulation, according to Dr. Gangat.
Low-dose aspirin is commonly used to help prevent blood clots and can also improve circulation-related symptoms, and Dr. Gangat notes that cytoreductive therapies such as hydroxyurea and interferon may also improve PV-related symptoms and quality of life.