By Rox Talbot
OT Student University of Northampton
Working with LCK OT Kirsty Stanley
30th October 2021
Having a diagnosis of a relatively new and poorly understood condition can raise difficult emotions akin to grief. Kubler-Ross (1969) identified the process of grief as staged through denial, anger, bargaining, depression, and acceptance. It is important to remember that moving through this cycle will not be a linear process and just as you think you are coming to terms with one aspect, your emotions can flit right back to the beginning of the cycle or you may even skip sections of the cycle.
When my son was diagnosed with additional needs, I skipped straight to acceptance because it was something we had suspected for many years and I suddenly felt validated. However, at times I skip back to anger when things are not progressing as they should, or he is not being supported as much as he needs. During these times I grieve for where he should be, but then I go straight back to accepting that he is who he is. I do this through my own internal dialogue as well as discussing issues with other parents who I know are going through similar situations and who are also experiencing the same cycle. Not everyone’s experience will be the same, however parallels can be drawn and reflected upon.
Denial
No parent wishes for their child to be chronically ill and so it is a normal reaction to reject that idea and search for every possible cure. However, it is important to remember that a diagnosis is not the be all and end all outcome, but often purely a label through which access to other services may be gained.
A cure may not be possible (in Long Covid at least not until more research is completed) but we can always take steps to manage the impact that the condition and its symptoms have on your child.
Anger
It is natural to feel angry and to question Why? Why me? Why my child? Why now? What did I do wrong? In these situations, talking to families who are going through a similar journey can be really helpful. You can find a link on the support available with Long Covid Kids here. Talk to your family, your friends, peers or even a trained counsellor for additional support.
You are just as entitled to support as your child is.
It is ok to ask for help.
Bargaining
Also known as negotiation, this is an attempt to regain control of the situation. What can I do to change this?, is a question often asked, and the answer may be nothing. What if I hadn’t caught Covid? What if I had asked for a second opinion? What if I hadn’t sent my child to school? If you are a spiritual person, you may find yourself praying and interacting with your higher power to substitute your child’s illness for a sacrifice of your own. This process is part of the acceptance that there is nothing differently that could have been done, and once this is psychologically accepted, the next stage may be depression.
Depression
In this stage, parents can find themselves depressed at seeing that their child has ongoing challenges. Feelings of guilt, anxiety and hopelessness can follow as well as a realisation of the emotional/financial/physical demands that are placed on you. Again, it is important to acknowledge these feelings and seek advice on how to further deal with this stage.
Although depression can be an entirely appropriate and necessary response, if it continues or increases in severity it can also become a clinical diagnosis. If you are concerned do speak to your doctor who can help you to access support.
Acceptance
Next, we come to acceptance. We realise that having a child that needs extra support is okay. We still love them unconditionally and we are going to work as a team to try and achieve what is important to the child and improve their quality of life in line with what they are able to and want to achieve. Acceptance is about coping with a new reality and embracing the present, it doesn't seek to ignore the loss.
The World Health Organisation (1948) defined health as ‘a state of complete physical, mental, and social wellbeing and not merely the absence of disease or infirmity’. By this definition, children with Long Covid can indeed be healthy as long as this wellbeing is maintained. Wellbeing is defined by the Cambridge Dictionary as the state of feeling healthy and happy. The significance of this definition is the word “feeling”. We can still feel healthy when our physical or mental health is affected, and so the state of wellbeing is entirely dependent on the individual’s perception of their own health and happiness rather than a professional judgement. With this in mind, it can be helpful to focus on your child and the impact their condition has on their (and your) daily life rather than the overall label of Long Covid as an illness/disability.
It is also worth recgonising how others around you, including your child, siblings or other family members are experiencing this process too.
Rox Talbot - OT Student University of Northampton
LongCovidKids.org is a patient-led advocacy and support organisation led by Sammie Mcfarland for families of children with Long Covid. Our story started with a short film on the long-lasting symptoms of Covid in children.
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