Caring for a partner with a chronic illness

A PID specialist nurse shares her experience of caring for her husband who had lung disease.

'Just as every individual with a chronic illness is different, so is their partner, and the relationship between the two of them. So, while my experience may resonate with many, it may not be true for others.

The first thing I’d say is that your partner’s chronic illness doesn’t define who they are. While your partner may have lungs that are susceptible to serious infections, as well as a very recognisable ‘cough’, these things do not make them who they are. It’s important for partners, carers and healthcare professionals to remember that fact and to treat each person as a unique individual and not the sum of their physical ailments. There is more to life than talking about sputum samples and lung function!

In it together

The experience of living with chronic ill health will be different for the individual affected and their partner. Of course, when you see someone you care about suffering, your natural reaction is to find ways to help and make things easier for them. In that sense, you are both ‘in it together’ and this can strengthen relationships if both partners are happy with this agreement. But it’s also a reality that both your experiences will be significantly different. I have never coughed so hard or violently to bring up the thick sputum off my chest that it made me vomit; but I’ve watched that happen to my husband and cleaned up the vomit after him. I don’t know what it’s like to be so physically drained from trying to breathe during an acute chest infection that I need to sleep several hours during the day; but I know how exhausting it is to have to find extra reserves of energy to complete essential housework, walk the dog and cook dinner after a full day at work to enable my husband to get the rest he needs.

I think carers can often be the ‘invisible’ casualty in chronic ill health. So many times well-meaning people would enquire ‘How is he?’, yet only a few would think to ask how I was. And it’s my experience that, at times, partners need extra support too, albeit in different ways.

Opening up

It’s difficult to open up and admit that life is hard. You can feel like you have no right to find life hard, compared with what your loved ones have to deal with daily. But you do have a right, and I guarantee you won’t be the only one feeling like you do in your situation. Sometimes it can be difficult to share your struggles with your loved one themselves, but I’d recommend being honest with them (and maybe a close friend) about how you’re feeling. You can also share your worries with your local specialist nurses. My husband said that he was glad his nurses were there to look after me as well as him, because when I was okay, he was okay!

I was encouraged to take time out for myself when I could. The first time I did, I felt guilty as I went shopping with friends while my husband was in hospital having intravenous antibiotics. I visited him for six days out of seven, but it took a lot of strong talking to myself to set aside one afternoon just for me. It is so important to look after yourself though, both physically and mentally. Taking time out for yourself means that you are more refreshed and energised to continue supporting your partner in the long term. Never underestimate how important it is to look after yourself. This may mean asking friends and family for help. For example, sometimes we would ask friends or family to walk our dog when we didn’t have the energy to do it ourselves. It’s difficult to ask for help but we found that people often don’t know how to help and appreciate being given a specific task.

Reaching out for help

Online and local support groups can be a useful source of help, too. Communicating with someone who ‘gets’ your ‘normal’ of living with chronic ill health is incredibly encouraging and refreshing. I met a woman whose partner had the same condition as my husband, and it was wonderful knowing that she too lived a life with daily sputum production and tablets to be taken! Often you can make good friendships through these channels, and you can find you have more in common with each other than just the chronic illness. We are still friends five years later.

Living the life you want to lead

Finally, living with chronic ill health in your relationship can be incredibly boring. Hours of waiting for overrun hospital appointments, collecting never-ending prescriptions and spending endless weeks in hospital for intravenous antibiotics, to name a few. We tried to make these boring times as fun as possible. I would accompany my partner to his clinic appointments when I could, and then we would treat ourselves to an Ikea dinner afterwards. When my husband was an inpatient, we’d spend evenings playing board games. Whatever you can do to lighten the circumstances, do it.

And to finish as I started… my husband was never defined by his chronic illness and therefore when he was regularly carrying out his daily treatments, being monitored by his specialist team and wasn’t acutely unwell, we gave his illness as little attention as possible and got on with living the life we wanted to lead. As I mentioned before, there are far more interesting things in the world than sputum samples and lung function!'

Posted July 2018