‘There are three of us in this marriage’. How very apt this quote can seem when you are living with a chronic illness. Unless you and your partner met after the illness appeared, it is likely that your relationship has been thoroughly tested with the onset of the condition. Whether you are the one with the illness, or the spouse of someone with an illness, your partnership can begin to feel crowded and overwhelming. Overnight the script is flipped from a partnership to a patient/carer scenario and it can be hard to let these new roles go. Like it or not, chronic illness impacts heavily upon the healthy partner in the relationship, as they shoulder more responsibility, be it financial, emotional or practical. Statistics have shown that a frighteningly large percentage (approx. 75%) of relationships coping with chronic illness will eventually fail.
The challenges that life can present have the potential of bringing you closer or tearing you apart. Flexibility and openness along with good communication between the two of you are keys to remaining close to one another during the challenge of a chronic illness. You need to listen to your partner and understand their point of view.
The partner who is ill needs to understand the enormous impact this illness has had on their spouse. Whilst we don’t have the option to walk away from our illness, they do. That fact that they stay tells us an awful lot about them, and about how much they love us. Accept this love with grace and thanks and make sure they know how appreciative you are for their unquestioning support.
In the same vein, the healthy partner needs to understand how vulnerable and frustrated their spouse may feel. If they are unable to work, understand how frustrating it must be for them and how isolating it can feel.
So, we need to accept and accommodate the illness but also maintain an equal and personal relationship, but how? If you are the healthy partner, how do you balance your lives around this new normal?
Talk, talk, talk
As with everything, the key to a strong and positive relationship is communication. Talk about your hopes and fears, talk about your emotions surrounding the new situation, talk about the highs and the lows. Agree to talk to each other with impunity- you must have the freedom to express exactly what your feeling without fear of upsetting you partner. If you’re able to talk, it prevents you bottling up everything inside, allowing it to fester and become negative resentment. Talking is important, but just as important is listening. You need to hear exactly what your partner is saying. There is no point in talking about things if you don’t also listen to each other.
Speak to your partner about the things you are finding overwhelming or difficult and together you can address the ways in which you can support each other. Don’t be afraid to ask your partner to do something. It can seem difficult and you may want to protect them, but it important that you have as fair a division of responsibility as possible.
Ask for and accept help
This is harder than it sounds. I always try to cope on my own whereas my wife will always reach out to friends and family. You need to agree on a compromise which helps you both. Over the last 18 months I have become far more accepting of support offered by friends and family and have found that the more I speak about the illness, the easier I find my day to day life. Speak to your close support circle about your struggles and be prepared to listen to their advice and accept their help. It is likely that you would do it for them, so allow yourself to accept their love and assistance.
Accept that your process will be a trial and error situation
There is no ‘one size fits all’ solution for this. Every couple will face these struggles in their own ways and will find their own strategies for muddling through. Listen to advice, and try everything, but don’t be disheartened if something doesn’t work for you- there will be another strategy which does click.
Personify the illness
If you can see the illness as a separate entity, it becomes easier to focus your frustrations on to that, rather than onto your partner. In our house, we refer to FND as Cake Brain and when my wife is really fed up, she rants about her frustrations that CB is stopping me doing things, rather than about me not being able to. This helps in making me feel less guilty about the situation and gives her a fixed point at which to vent her anger rather than an abstract condition.
If there is something that you love to do, make time for this. Whether it is sports, music, art, cooking etc. having time out, away from the illness is enormously important. This can be something you do together or something you pursue on your own, having a hobby can take your mind off things and help you reengage with things that make you feel happier and more positive.
Have time to yourself
Just because you are coping with this illness does not mean that you can no longer have fun or do things for you. You are spending your time caring for the person you love but you need to remember to love yourself as well. Whether it is as simple as having a bath in peace, or watering the garden, you need to have time to process your own thoughts and emotions. It is not selfish to spend time on yourself.
Have time apart
If you are able to, schedule some ‘days off’. Whether it is your partner going away, or you, it is important to have your own space. Every 6-8 weeks I go and stay at my cousins flat in London. To me it feels like a treat and helps me to be independent, for my wife it gives her a full weekend not having to worry about keeping an eye on me. Being apart gives you time to reflect on your relationship and when you are then back together, you realise how much you missed one another.
Take care of yourself physically
Don’t ignore your own health because your partner is ill. It can be easy to put your own needs on the back burner if you compare your own health with your partner’s, but everybody has their own experiences. Just because you don’t seem to be ‘as ill’ as your partner, doesn’t mean that you don’t deserve medical attention.
Keep an eye on your mood
It can be worryingly easy to become introspective and isolated when you are caring for your partner. You must ensure that you keep a close eye on your own situation and if you are feeling low, emotional, tired etc. go and talk to your GP. It is important that you take good care of yourself, if you don’t and allow yourself to become detached from your emotions. There are helpful systems in place if you just ask for help with this.
Spend time together
As far as it is possible, have a ‘night off’ from the illness. Try to schedule a time when you can eat together, play games, have conversations with no external distractions. For example, every Friday my wife and I have a ‘date night’ supper in the dining room when we will talk about everything and anything apart from FND. It is important to ensure that emotional and physical intimacy is maintained as much as possible to strengthen your bonds as a couple and not solely a team fighting illness.