At the PHA UK we recognise that pulmonary hypertension can impact mental wellbeing as well as physical health.
In 2019, we conducted a major survey which showed 53% of people diagnosed with PH have experienced or been diagnosed with anxiety or depression — yet only around half of these people (58%) had asked for professional help.
It’s important to understand that you are not on your own, and our resources and support tools are designed to help you take control of problematic feelings and emotions. Anxiety and depression can be experienced by those around the person with the diagnosis too, so we would encourage family and loved ones to also make use of the support available.
Our free self-help programmes — Overcoming Worry & Anxiety and Overcoming Depression & Low Mood — are the world’s first self-help interventions developed specifically for people with PH. Both are based on Cognitive Behavioural Therapy (CBT), developed by psychologists, and can be worked through in your own time at home. They are free for all members of the PHA UK and their loved ones.
Find out more about our self-help programmes
Our Listening Line gives you dedicated time with a PHA UK team member to talk through any worries or concerns you have relating to your emotional or mental wellbeing.
Find out more about the Listening Line
Pulmonary hypertension can place a strain on relationships with your partner, friends and relatives. It can be difficult to tell people that you have PH, and the best advice is to be open and honest — generally, those who are close to you will want to know. The same applies to telling children. The sooner people know about your PH, the sooner they can understand it and come to terms with it.
You may also find that emotions relating to your diagnosis are affecting your relationships with those around you. It can help to talk to those close to you, so they know how you are feeling. If you feel you need to talk to someone outside your normal circle of friends and family, ask your PH specialist team — they will be able to talk things through with you, or recommend someone who can help with the emotional effects of PH.
If you have PH and are looking after children, it can be difficult. Childcare places extra demands on you, both physically and mentally. Here are some tips that may help:
Intimacy is an important part of many relationships, and PH can affect it in ways that are rarely talked about openly. You can find frank, practical guidance on our PHocus on Lifestyle website.
We have also published a booklet, It matters to me: A guide to relationships and intimacy for people with pulmonary hypertension, which explains how PH and its treatments can affect you as a sexual and intimate person, and discusses ways of dealing with this. Find it among our publications.
When someone is diagnosed with a condition like pulmonary hypertension, it can affect family and friends as well as the patient themselves. Feelings of concern, sadness and anger are all very normal emotions, and can continue throughout a loved one’s journey with PH.
Membership of the PHA UK is open to anyone affected by PH, including friends and family of those diagnosed.
Finding out more about pulmonary hypertension can help you understand and support someone living with the condition. As well as the information on this website, we produce publications and resources on specific topics — including welfare and benefits, relationships, clinical research and emotional impact. Find the full range and order for free.
Friends and family who are struggling can also access our Listening Line to talk things through with experienced PH professional and PHA UK team member Paul Sephton.
Caring for someone with PH can be physically and emotionally demanding, especially as, for many, the condition can deteriorate over time.
If the patient is in contact with a social worker, they can offer guidance, support and advice to you as a carer. You may also be eligible for financial assistance in the form of benefits — find out more about accessing benefits.
Our private Facebook group for unpaid carers is a safe, supportive space to connect with others and share experiences and advice, without judgement.
A private Facebook group, Phighting On, has been set up for those who have experienced loss due to pulmonary hypertension. It was created by PHA UK member Sally Parker and her daughter Alice, with the support of our charity, after Sally’s son Josh died at the age of just 21. The group is for anyone who has lost someone, no matter how recently or long ago.
Visit the dedicated area of our lifestyle website to hear from experts in mental health and read the experiences of others. You’ll find information about ICU delirium and procedural anxiety, and discover how other people with PH manage their anxiety and boost their mental wellbeing.
There are also many organisations and charities dedicated to supporting people experiencing mental health difficulties. You are not on your own.
NHS self-help
Guided self-help, apps and online tools. Visit this section of the NHS website.
Anxiety UK
An independent charity supporting people living with anxiety, stress and anxiety-based depression. www.anxietyuk.org.uk
Samaritans
Emotional support for anyone in distress, struggling to cope, or at risk of suicide. Their free helpline is available 24 hours a day on 116 123. www.samaritans.org
Mind
Advice and support to empower anyone experiencing a mental health problem. www.mind.org.uk
If you need urgent help for your mental health, click here.
