Clinical psychologist Emma Offord talks to Steph Pollard about the emotional effects of PH on partners.

No two relationships are the same and the way two people work out how they live their lives together varies widely.

External influences affect their partnership too. Some couples go through many challenging experiences in their life cycle – working through a range of family, work, health or other personal issues. Others have a much smoother ride, with far fewer bumps in the road.

Plus, whether you are near the beginning of your journey with lots of hopes and dreams ahead of you; or you have been together years and have perhaps raised a family, achieved some of your goals and have careers behind you – every aspect of your situation affects how you may respond together to a new challenge such as a diagnosis of pulmonary hypertension.

Dr Emma Offord, a clinical psychologist who has worked extensively with PH patients and their partners at Papworth Hospital in Cambridge, says: “No two couples face a diagnosis of PH the same way and the level of disruption it causes to their lives is different for each one.

“If a couple are at the early stage of their relationship, they may have a great many more things to work through in terms of negotiating the loss or adjustment of shared hopes and expectations for the future.

“Partners who have been together years can face the huge adjustment of having established roles and preferred identities challenged as they are required to review what responsibilities they take on in light of the change in circumstances.”

Emma Offord

Emma also says that the adjustment to living with pulmonary hypertension may present very different demands on each couple’s relationship. For example, if this is their first experience of dealing with a chronic health condition there will be a lot of information to take in and lifestyle changes to adapt to. Those who have had other health issues may be more practiced and resourceful in managing PH but may face other pressures of ongoing and multiple health concerns –  and the impact of these on their health, well-being, social and financial circumstances.

“These are all generalisations of course,” says Emma, “As we all know every relationship is unique. One thing is for sure though –  it is important not to underestimate the emotional impact on the relationship and both partners.”

Partners, like the patient themselves, may feel shocked, confused, even angered or scared by the news. And it’s important for partners to acknowledge their emotions – the person with PH is obviously the focus of everyone’s attention; and is the person he partner loves and cares about – but they must accept they are allowed emotions too.

“It’s important for partners to look after themselves, and be supported to do so. Nurturing their own emotional well-being is important – not only for their own sakes – but how else are they going to be in a good position to support their partner with PH?”

Every relationship is different but Emma says partners shouldn’t think they are the only one who has ever felt in a certain way or had a very human – and imperfect –  response to an emotional challenge.

“Sometimes partners with the best intentions can over compensate and overwhelm the person with PH with their support and care”, says Emma. “They don’t mean to be insensitive, take over or encroach on their partner’s personal space and independence but a desire to ‘fix it’ and play the role of carer can be too much.

“Also there can be complex feelings spurred by trying to make sense of the situation. Feelings of helplessness, even rejection as partners feel ‘outside’ this big new thing in their shared lives can lead to difficult emotional challenges.

“And the popular ideal of a family all ‘pulling together’ and facing whatever is thrown at them can also put pressure on partners who may feel ashamed to admit they are basically feeling fed up or out of their depth. This can lead to destructive feelings of failure, guilt and real anxiety.”

Emma stresses that it’s very important to remember that all relationships between two people are not easy and sweet-natured all the time. Couples facing very ordinary day-to-day challenges can easily fall out over trivial things like the shopping or where to put things in the kitchen cupboards. There’s no reason why having a serious illness should suddenly make your relationship perfect and either of you ‘wonder woman’ or ‘superman’.

“As always communication is key,” says Emma. “It is easier said than done but its best to be open and talk directly to each other about what support you’d like, rather than get annoyed and grumble about what your partner’s not doing. For example, asking to carry a heavy bag rather than hoping they’ll notice you are struggling with it.”

It’s also a good idea to maintain aspects of ‘normal life’ life you’d both like to keep. You may need to make adjustments, but try to work out how you can carry on doing what you enjoyed before, within your new ‘norm’. Try not to throw out  or diminish important aspects of your lifestyle in the face of this new challenge. Try to work out how you can positively review and pursue your shared and separate interests.

Emma also urges people not to hesitate to draw on the support networks of close family and friends; to be proactive and ask for help to share out some of the new and changing responsibilities. Don’t just keep it locked within the relationship.

With respect to intimacy, a serious condition like PH can both physically alter the body – with things like bloatedness, skin tone and texture, fitness and even IV therapy – and it can also affect a person’s feelings about themselves, their own body image and self-esteem. Partners can feel worried, protective and desperately unsure of new boundaries; or thrown by new perceptions of themselves as carer rather than partner.

“It really is best to not let these feelings go underground,” says Emma. “Difficult though it may be for many couples to talk about them, unspoken questions and buried feelings can damage and distress a relationship. Relationships need nourishing and they thrive on understanding and honesty. If couples need help in this, and any other areas, it’s also vital to remember that asking for help is a sign of strength and a positive action rather than any sort of failure.”

Emma often involves partners in talking through emotional issues with individuals with PH. And mediation organisations like Relate are there to support couples facing any sort of difficulties – they are often misconceived as only being there for those who feel close to a breakdown.

In conclusion, partners of people with PH should be kind and compassionate to themselves as well as their partner. And they mustn’t be alarmed or ashamed by the strength of their own reactions which are common and perfectly normal. Partners should forgive themselves for any negative thoughts and feelings and try to see them as reactions to the situation and not their loved one. Most importantly, couples need to talk and seek help and support for each other and/or their relationship if they feel they need it.

Through PHA UK’s relationship with Anxiety UK, PH patients can access informed support from this specialist counselling and support charity. Contact 00844 3329010. A free guide to relationships and intimacy for people with pulmonary hypertension and their partners called ‘It matters to me’ is available from the PHA UK office on 01709 76145.

A free guide to relationships and intimacy for people with pulmonary hypertension and their partners called ‘It matters to me’ is available from the PHA UK office on 01709 76145.