Riding the Emotional Waves of a Chronic Condition

By Simone Albert

Wading through the waves of emotions that can crash over anyone receiving a new diagnosis of a chronic condition is nothing short of confronting and overwhelming. Adding to this the element of a life-threatening diagnosis such as severe allergies, the pain, sleepless nights and itching that eczema can bring with it or the fear of chest tightness and shortness of breath of asthma, can be debilitating. These emotions can either knock us off our feet or carry us safely back to shore.

Understanding the psychological and emotional phases of a chronic condition is sometimes half the battle. The unknown can throw us off course of a once well laid out future. With this loss and uncertainty comes with it shock and denial, and anger and disbelief. And yes, over time, eventually acceptance flows. Even the power of growth may be experienced.

I remember when I was riding these overwhelming waves of emotions, not realising that I was grieving the future that I once thought was ahead of us. And then drowning in a future that was very foreign, hard to comprehend and all unknown. Over time it came to my realisation that through adjusting carefully and slowly to a new normal, that the quality of life that we were seeking, could be achieved just as I had once imagined. The power of this came as extra knowledge was sort and gained, and a greater understanding was achieved. A few modifications of how I would be best able to manoeuvre this newfound future safely with the new diagnosis grew.

It is important that we do not underestimate the emotional effects that living with a chronic condition can have on ourselves as a parent or our child if they are the ones that are diagnosed with the chronic condition. In addition to guiding and supporting our children through the management of his or her allergy, eczema, or asthma symptoms there are ways we can also support them with circumstances that are emotionally upsetting to them.

Regulating our own emotions as a parent is key in supporting our children to not escalate in their own emotions. Being mindful of where our children are developmentally is crucial in helping them work through some of their bigger emotions that might be present. Explaining to your school aged child that everyone faces challenges as they grow helps to normalise the feelings that they may be experiencing. This has them also feeling heard and acknowledged. Supporting your child to move through their bigger emotions with strategies such as distraction, movement, cognitive, sensory calming coping skills allows for them to be able to work through challenges more smoothly and resilience is built. An older child may benefit from engaging in problem solving activities, coming up with strategies together and working through situations that might arise in time, which in turn fosters confidence.

Knowledge is power in keeping ourselves or our children safe when living with a chronic condition and gaining the right knowledge from trusted resources is key in feeling empowered in the life that now lays before you. Being prepared and not scared is our other strength. Knowing what is happening medically can reduce our emotional thermometer. Having the boundaries in place that you and your family understand in keeping everyone safe helps manage and reduce anxiety and overwhelm while risk minimising and helps create confidence in being able to manage any situation that may come before you. These boundaries shift and develop over time and in knowing this allows more freedom in what is within your control and allows you to embrace this strategy more openly.

Working through the shock and disbelief of a chronic diagnosis takes time. Giving yourself permission to grieve and grow within this new framework is empowering. Psychological support is as important to work through as the medical understanding of a chronic condition. If you or a loved one is dealing with the social and emotional effects of managing your own or your child’s chronic condition, support can help. Know that you are not alone.

Food Allergy Counsellor and author of ‘Beyond the Allergy Diagnosis – A Guide to Understanding and Navigating the Emotional and Psychological Phases of Allergies’ has teamed up with Australia’s first Free From + Allergy online community, a resource that connects and empowers people with allergies and food intolerances.