Living with PV: the impact on daily life

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My biggest challenge living with PV is the tiredness. It varies from one day to the next and makes it tough to lead a normal life. I have had it for more than three years now, so am getting better at managing my days to reduce its impact.

In this section, we discuss the impact that PV can have on daily life, which varies according to severity of the disease.

People with mild forms will usually be able to lead normal or near-normal lives. Those at greater risk of complications will require ongoing monitoring and treatment with regular medical appointments and check-ups.

Some of the symptoms of PV, such as tiredness, can have a major impact on everyday life. The itchy skin that many patients with PV experience can also be very debilitating, and redness of the skin in the face can contribute to a reduced quality of life.

Another challenge for people living with PV is that it is a rare disease that few people have heard of. In addition, they may show no outward signs of their illness and so other people may be unaware of the problems they face and less inclined to be sympathetic.

+ Employment

Regular appointments and check-ups may mean that employees have to take time off work on a regular basis.

Symptoms such as fatigue and pain can affect performance.

It is a good idea to ensure that employers understand the implications of PV so that they can take account of specific needs, for example by offering flexible working hours or reducing working hours. Your specialist or physician may be able to provide supporting information.

+ Mental health

I struggled with my diagnosis initially, but thankfully I was given access to a psychologist at the hospital. Being able to be honest and open up to someone and get some perspective on my feelings helped me on my journey to acceptance.

Being diagnosed with any type of cancer can be distressing and can cause anxiety.

Living with a long-term condition that needs ongoing management can be stressful and can lead to a feeling of being ‘different’ from friends and family.

The fact that PV is rare and few people have heard of it, can cause particular issues. Friends and family may under-estimate the impact it has on their loved one.

Common symptoms of PV, such as fatigue and pain, can sometimes make it difficult to take part in social activities or to play a full role in family life. This can lead to a sense of isolation or even feelings of guilt.

It is helpful to be honest with family and friends. There is no need to put on a brave face all the time and loved ones can offer greater support if they understand exactly what you need. Look up information on PV for family and friends so they have a clear idea of the impact of PV and how it affects you.

If negative feelings are becoming difficult to cope with, ask for help. Talk to your doctor or seek advice from a mental health professional.

A range of different techniques and resources can be helpful. These include: relaxation techniques, breathing exercises, meditation, mindfulness, cognitive behavioural therapy (CBT) or counselling.

Try to keep mentally and physically active and stay connected to other people as much as possible.

Consider joining a patient support group. This provides access to up-to-date information about PV and also to other people who are going through a similar experience.

Practical tips for managing PV >

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