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Coming to Terms with Chronic Illness as a Family

Reading time | 10 mins

Chronic illness doesn’t just impact a single person – it impacts the entire family. One of the most important ways in which it does so is communication. All families struggle to communicate effectively at times. Add the additional layer of stress that comes with chronic illness to everyday life and this can make it difficult for both parents and children to verbalise their feelings.

During the time we’ve lived with my chronic illnesses our boys have grown from young children to teenagers. My husband Joel, who’s my main carer, felt our situation (which I will discuss in more detail later) was negatively affecting our family relationships.

He discussed his concerns with me and because we’ve faced many challenging experiences – from which we’ve learnt a lot from – we knew our limitations and realised that we needed support.

Together, and with professional support, we’ve developed strategies to restore our connections – both as individuals and as a unit. We now communicate more positively and have more meaningful relationships. As we’ve grown to live with a ‘chronic illness filter’ on, our viewpoints have truly shifted.

I would like to share my family’s experience, as well as some research I have picked up along the way to help other families communicate better.

The emotional impact when a family member is diagnosed

When I was first diagnosed with migraine my boys were just three and five years old. A combination of medicine and other holistic treatments worked, and normal life quickly resumed. I continued with my teaching career and we were able to give the boys a vibrant, fun-packed childhood.

Migraine was still an occasional nuisance, but quickly became background noise. Unfortunately in autumn 2013 I started having attacks every weekend. A difficult situation at work did not help matters.

What made things worse, was that my family life suffered from this. When a family member is ill, it tends to raise the anxiety of all those close to the patient. When I was hiding from light and noise, Joel had to do almost everything. If I tried to fight it, the pain made me irritable and our family life became strained.   

Sadly, a few months later I was diagnosed with another chronic illness – a rare brain condition that left me in constant, debilitating pain. Suddenly Joel became the sole earner, the primary parent and my main carer – all of which had a massive impact on his mental health, which is something I didn’t fully understand at the time.

Communicating as a family in crisis

My world became very dark. For a long time I believed that the boys and Joel were suffering because of me. I couldn’t see that I hadn’t chosen this life. Joel tried to reassure me, but I was sure that everyone, especially Joel, would leave me because of the hurt I caused.

This became a constant loop as I couldn’t retain his reassuring words. He kept telling me that he wasn’t going anywhere, but each time he was harshly reminded that I was lost under a dark cloud of brain fog. Out of everything this hit Joel the hardest and nearly defeated our family team.

Our usually strong family communication was breaking down and we became a family in crisis.

In an article about the impact of chronic illness on the family, Euromedinfo summarises it neatly: “Long-term illness, even in the most stable and supportive families, brings changes in family relationships. Illness produces disequilibrium in the family structure until adjustments can occur.”

We were dealing with anxiety, panic attacks and anger, individually and as parents, partners, children and siblings. We weren’t able to verbalise our feelings effectively and we were becoming polarised. Our usual harmonious teamwork was being buried with the jitters and critters of uncertainty.

Learning to accept a new normal

A few months in, it finally hit home for both of us that our family life was never going to go back to normal. When my condition got really bad, I was unable to communicate properly or retain a conversation thread, so Joel became my advocate. This put him under far too much pressure. In more lucid moments I knew this new normal was too much for us to deal with on our own and I had to accept that we needed help. This was a hard thing to admit, but I knew we couldn’t carry on like this.

I reached out to my trusted friends who happily organised the school pick-ups. My GP referred me to a social worker who was very reassuring. She listened as I described my day: needing to rest after a shower, struggling to put my socks on and neglecting to eat. She took my concerns on board about the boys and Joel's emotional well-being. After her evaluation she arranged a PA (carer) for me, to enable me to focus my energy on being a mum and to give Joel a break.

I began to take counselling sessions to start to process my guilt, anxieties and the physical and mental suffering I was experiencing so I could enjoy family life again.

Slowly, as we built up all layers of emotional nourishment, we began to accept our new normal: A world bolstered by professional help and the hands of friendship.

Finding a path through chaos

There were a few key strategies and tricks that we tried as we found our way along this new path. Which, after the chaos left by a world turned upside down, felt more like a trail left with scattered breadcrumbs than a path. We didn’t have a game plan, and some ideas worked better than others. As the needs of every family differs some might work for yours and some might not. These are some that worked for us:  

  • We set aside time to talk to the boys about how they were feeling and to explain what was happening in my brain at a level they understood. This level kept changing as they grew older.
  • We involved the boys’ school from the start, which is a vital but easily missed step. We set up regular meetings with their teachers and the Inclusion Coordinator.
  • I conjured up an activity to release frustrations when Youngest was lashing out at home: the window represented my illnesses and we could shout and swear at it, age appropriately, for 5 minutes. Then we blew the feelings away.
  • The boys had secret diaries, with keys, to write whatever they liked in.
  • Eldest (then 10/11) had in-school sessions with a play therapist as he was very anxious.
  • At the end of each day, we wrote our positives from the day on strips of paper and popped them into a positive jar. Then, when you were having a rubbish day you could read some positive notes to cheer you up. My favourite said ‘Having cuddles with mummy!’
  • By secondary school Eldest had told us he didn’t like being taken out of class so we arranged child led support with a learning mentor. She really helped when he started having panic attacks and through my first surgeries.

We followed this winding path over a couple of years, adapting as the boys matured. Joel and I discussed parenting strategies, but as I was often out of action, if anyone took a slight detour Joel had to sort it on his own. So he suggested family therapy to rebuild an even stronger team.

Family therapy: rebuilding a connection

Family therapy was unlike anything else and initially we questioned why we’d taken our polite, mature boys on this jaunt. But as their teenager years approached, our family was taking a complex new route. It was necessary to reframe the course and shift patterns to create positive connections.

The intricate nature of our lives could be overwhelming and Joel and the boys needed the support to adjust and be heard.

Our guide led the way as we explored our family dynamics. She encouraged problem solving, drawing out our individual strengths and developing family cohesion. We had some revelations along the way as we saw our family life through the boys’ viewpoint.

The biggest of these was realising that the boys were holding back to protect us just as we felt we were protecting them.

It was apparent we needed to create opportunities to talk openly and question anything: from my extreme pain to the emotional distress any and all of us experienced at times. The boys told us we were being ‘too hard on ourselves,’ showing us their deep insight into our world.

We chose to encourage growth, both individually, and as a family despite chronic illness altering the dynamics.

A new approach

We were no longer a family in crisis but we still needed to approach family life differently. We had developed our individual roles and found strengths within the family. With the foundations for a harmonious family set, adding teamwork to the mix meant we were working for a common purpose.

By putting into practice the language we’d learnt to use when raising awareness of conflict without hurting feelings, we were able to work on the common disagreements that had led us to family therapy. We began monthly meetings to work through ongoing issues and to build trust.

The key to the success of these meetings was that we actively listened to each other and were interested in our boys’ frame of reference. The trust we’d worked so hard on building meant that they now knew it was okay to tell us if our words or actions have upset them.

Today we have a 13 and a 15 year-old in the house and there are hardly ever any arguments. Yes, really!

The boys have a voice as part of our team, so while we have little need for these meetings now, I felt we were still missing something. Due to my bed-bound life, we naturally don’t all come together to share our wins, as we would if we ate dinner together each day. So I felt the need to replace that.

Restarting our monthly family meetings

Every day, each family member comes to see me and we share the day’s highs and lows. I write my positives in a daily journal. These I take to our monthly family meetings, which I’ve restarted because I wanted to bring the benefits to our team. At our monthly meetings we spend time together without any distractions and use the time to ensure that:

  • We're satisfying everyone’s emotional needs and general wellbeing
  • We’re able to carry out our roles within the team and show gratitude
  • There’s a safe place to be honest and open about any problems or concerns
  • We thank each other for support during difficult or stressful times
  • We role model being open in a trusted team about physical and mental health issues
  • We recognise what the other members of the team have done to help us and thank them
  • We celebrate our positives from the month and share personal achievements and small wins

Finding a new perspective

As parents we’ve always worked hard to make our home a safe haven. Chronic illness has taken us on an unexpected detour, but through the support we’ve had, both professional and not, we’ve been able to look at things in a different way. Believe it or not, but this has actually increased our individual resilience and enriched family life.

We cope effectively with the stress of life with chronic illness and we benefit immensely from being able to communicate with each other positively and productively. We’ve discovered our roles and individual characteristics because chronic illness has pushed us to the limit and made us stronger for it.

The takeaway

Our boys have grown into strong, individual characters. They’ve embraced our teamwork approach and having such positive communication has revolutionised the way we interact. We role model that it’s okay not to be okay and ensure they know we’ll always listen.

We’ve worked hard for this, seeking help through counselling and working with a life coach, because we want to be the best we can. We’re grateful that chronic illness led to us understand each other on a new level and that the chronic illness lens has in many ways lit up our world.  

UK/MED/19/0245 October 2019