Supporting One Another When Chronic Illness Strikes

Approximately 6 years ago I was an active parent to two young children, going out to work and enjoying ‘date nights’ with my husband and get-togethers with friends.  I was a runner who loved to travel and was convinced that my long-standing illness – Multiple Sclerosis – would continue to stay in the ‘benign’ form that the Neurologist told me I had.  But it didn’t.  Fast-forward to now and my life is completely different.  The two young kids are now juniors in primary school, I am currently off work with a view to applying for ill health retirement and I now have physical difficulties that mean that I am limited in what I can do and where I can go.  I struggle with housework, travel and nights out.  Fatigue means that I have to plan, plan and plan some more, carefully weighing up the impact that days out may have on my health.  I can’t remember the last time I managed to get a proper workout through physical exercise and I have taken up more sedate activities – such as crochet – in replace of more physical ones.

But these massive life-style changes don’t only affect me.  Because I can’t travel without planning whether I can access areas easily, it means that my husband has also lost some spontaneity.  I no longer find it easy to join him on a night out in a particular venue that we used to go together to regularly, because of lack of disabled access, so I tell him not to miss out and to go with our friends instead.  I hate to say it but, although I feel like the same person inside, with the same interests that I always had, the fact that I can’t always fulfil these mean that I am different in many ways.  Illness has meant that I am less happy-go-lucky and spontaneous, for example.

But it’s not just me, is it?

Chronic illness often imposes life style changes that you wouldn’t have chosen if you were well – and these lifestyle changes impact not just on the person with the illness but also their significant other.

I have been together with my other half for 15 years and I have known him since I was a teenager.  Never before have I felt so much stress, worry, frustration and guilt as I have been for the past six years.  Before then, yes, I had MS, but it didn’t turn our lives upside down then like it has in recent years; my symptoms were mild and under control.  My husband is just what I called him: my other half.  If I feel all this stress and worry, he must be too.  The past few years in particular have shown me that it is important to recognise that support goes both ways; those of us with chronic illnesses need to be aware that we need to show just as much support to our partners as they do to us.  Some of that support may just be expecting that there are going to be ups and downs and accepting that your partner is going through their own issues, as a result of your illness.

When You are Chronically Ill

• Know that your partner would do anything to take your illness away – it is common for them to have feelings of  helplessness or frustration because they can’t change it and make it better for you
• Describe your illness and experiences in an easy-to-understand way – I found that the ‘spoon theory‘ has really helped my husband to understand when I can’t do something due to low energy
• Know that it is not uncommon for your partner to feel resentful at times – perhaps due to having to do the lion’s share around the house or because of the changes that have been imposed upon them
• Make sure you allow them time to nurture themselves and their interests, away from you – taking care of themselves physically, emotionally and spiritually, so that they can feel ready to help and support you
• Try and seek help from people other than your partner at times – these people may include parents, siblings, friends and even online support from others going through the same as you
• Be aware that their life is changing too – like us, they may feel grief for what they have lost
• Be aware that your partner may be trying their hardest to come to terms with what your illness means and the changes that it leads to and everyone’s way of coping may be different
• Acknowledge that your frustrations about your illness may impact on your mood – and therefore how you treat your partner
• Continue to show affection in the ways that you can
• Keep talking – being open and honest with each other helps to keep the lines of intimacy open

When Your Partner is Chronically Ill

• Reassure your partner that they are enough – that you love them, despite their illness
• Let your partner do what they need to feel better – and support them – this may mean that they decide to make changes in regards to diet or work, for example
• Listen – you may not have any answers, but it often just people who are ill to talk about their problems without any unsolicited advice
• Acknowledge that they will have up and down times – feelings of grief that come and go, frustration or even hope – and this may affect their moods
• Know that your partner may feel isolated – but find it difficult to change because of the limitations of their illness
• Acceptance of change – know that along lifestyle habits and perhaps physical ability have changed, but that your partner is still the same person inside.  Try not to compare the ill person with who who they used to be. Chronic illness is just that – chronic – it will always be there and, as hard as it can be, try not to set your expectations of them to what they used to be able to do
• Know that they feel just as frustrated as you do and the impact and effect the illness is having on their life – for example, I often have to nap to deal with my fatigue, which some may feel is a ‘nice’ thing to do.  However, napping because you have to often makes it a chore and something to be resented
• Know that they might feel like they are letting you down and are a burden – even if it isn’t their fault
• Know that the little things matter – a hand hold, turning off the telly to listen, a cup of tea
• Tell them you believe them when they tell you how they feel – though you might not fully understand
• Know that that there is nothing more frustrating when life plans don’t go to, well, plan.
• Be your partner’s advocate – learning about the illness, speaking up for them about why they have had to miss yet another function, asking doctors questions
• Keep talking – whether with your partner, friends or a professional.  Your voice is just as important as your chronically ill partner’s

Romantic relationships can be difficult in any circumstance; having one or even both partners with a chronic illness magnifies that exponentially.  Keeping the lines of communication open and having honest discussions with your partner about your feelings is important but might not always be easy and some people may benefit alternative means of communication, such as writing their thoughts down and then showing their partner, for example.

I would like to say a quick ‘thank you’ to my husband – my MS has not been easy on either of us and I don’t know what I would do without his help.  He works as a photographer, so is often available to help with the kids during the week, picking them up from school and making tea for us.  I am really grateful that he has helped me with this blog post; I couldn’t have written the ‘When You are Chronically Ill’ bit without him.

I really hope this post helps others.  Have a great week.