Published: October 2019
Updated: May 2022
Chronic illness doesn't just impact a single person – it affects the entire family. Communication is one of the first things to change.
All families struggle to communicate effectively at times. The additional layer of stress from chronic illness can make it difficult for everyone to verbalize their feelings.
During the time we've lived with my chronic illnesses, our boys have grown from young children to teenagers. My husband Joel - my primary caregiver - felt our situation was negatively affecting our family relationships.
He discussed his concerns with me. Because we've faced many challenging experiences, we realized that we needed support.
With professional support, we’ve developed strategies to restore our familial relationships. We now communicate more positively and have more meaningful relationships. As we’ve grown to live with a "chronic illness filter," our viewpoints have genuinely shifted.
I would like to share a combination of my family’s experience and research 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 three and five years old. A combination of treatments worked, and everyday 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 the autumn of 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. Joel had to do almost everything when I was hiding from light and noise. The pain made me irritable when I tried to fight it, and our family life became strained.
Sadly, a few months later, I was diagnosed with another chronic illness. This rare brain condition left me in constant, debilitating pain. Suddenly Joel became the sole earner, the primary parent, and my main caregiver. All of this had a massive impact on his mental health, which I didn't fully understand at the time.
Communicating as a family in crisis
My world became very dark. I believed that the boys and Joel had been suffering for a long time 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 he was harshly reminded each time 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 broke 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 dealt with anxiety, panic attacks, and anger individually and as parents, partners, children, and siblings. We couldn't share our feelings effectively, and we were becoming polarised. Our usual harmonious teamwork was 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 would never go back to normal. When my condition got really bad, I couldn't 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 hard to admit, but I knew we couldn’t carry on like this.
I reached out to my trusted friends, who happily organized 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 (caregiver) for me to enable me to focus my energy on being a mum and to give Joel a break.
I began to take counseling sessions to process my guilt and the physical and mental suffering I was experiencing. I wanted to enjoy family life again.
Slowly, we began to accept our new normal. Our world would need bolstering with professional help and the kindness of friendships.
Finding a path through the chaos
We tried a few key strategies and tricks as we found our way along this new path. Which, after all the chaos, 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 differ, some might work for yours, and some might not. These are some that worked for us:
1. We set aside time to talk to the boys about how they were feeling and explain what was happening in my brain at a level they understood. This level kept changing as they grew older.
2. 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.
3. I found a way for us to release our frustrations when my younger son began 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.
4. The boys had secret diaries with keys to write whatever they liked.
5. The older son (then 10/11) had in-school sessions with a play therapist as he was very anxious.
6. 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 favorite said, "Having cuddles with mummy!"
7. By secondary school, my older son 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 me throughout 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 excursion. But as their teenage 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 from the boys’ viewpoint.
The biggest was realizing that the boys were holding back to protect us just as we felt we were safeguarding them.
It was apparent we needed to talk openly and ask questions about anything, from my extreme pain to the emotional distress we all 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, we were working for a common purpose by adding teamwork to the mix.
We practiced using sensitive language during conflict and worked on the common disagreements that 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 had upset them.
Today we have a 13 and a 15-year-old in the house, and there are hardly ever any arguments. Yes, really!
As part of our team, the boys have a voice. 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
Each family member comes to see me every day, 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:
1. We're satisfying everyone's emotional needs and general well-being.
2. We’re able to carry out our roles within the team and show gratitude.
3. There's a safe place that allows us to be honest and open about any problems or concerns.
4. We thank each other for support during difficult or stressful times.
5. We role model being open in a trusted team about physical and mental health issues.
6. We recognize what the other members of the team have done to help us and thank them.
7. 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. Still, with all the support we’ve had, both professional and not, we’ve been able to look at things differently. Believe it or not, this has actually increased our individual resilience and enriched family life.
We cope effectively with the stress of living with chronic illness. Likewise, we benefit immensely from communicating with each other positively and productively. We've discovered our roles and individual characteristics because my chronic conditions have pushed us to the limit and made us stronger for it.
Our boys have grown into wise, individual characters. Having such positive communication has revolutionized how we interact with each other. Our rule is that it's okay not to be okay and ensure that nothing's off-limits if they want to talk.
We’ve worked hard for this, seeking help through counseling and working with a life coach because we want to be the best. We're grateful that chronic illness led us to understand each other on a new level and that the chronic illness lens has, in many ways, lit up our world.
NPS-IE-NP-00387 May 2022