As someone with anxiety, I have always been best friends with Certainty and Control. In uncertain situations I start to feel edgy. Pair that with situations totally out of my control and I’m scrabbling around trying to control anything I can. Often these days, that manifests in a very tidy house. While I am exhausted much of the time, my house is always very tidy. That is not because I selflessly try to keep it that way because it’s nice for me and everyone around me; rather it’s one of the only things that I feel I can control. A tidy house helps me feel calm and in order, even when things are chaotic around me.
For parent carers, control and certainty are things you often find swiftly slipping out of your grasp shortly after diagnosis (or even before).
For parent carers, control and certainty are things you often find swiftly slipping out of your grasp shortly after diagnosis (or even before). While there are very few certainties in life, there are far more uncertainties in the life of a parent carer. In the past when I came across uncertainties – e.g. will I pass this exam? I did things. ‘Doing’ helped me exert some control over the situation (sometimes). If I revised I increased the likelihood of me passing. If I wrote to 10 companies for a job, and sought out work experience, I increased my chances of getting an interview. I was a powerhouse of action. In many ways I still am, but my actions now have to be directed in a different way.
I will never have control and certainty over my child’s seizures; or whether tomorrow she will be well enough to attend school, or eat, or function. Whether the holiday we have invested in will be tainted by clusters of seizures. Whether we can even go. Whether we will get the respite and care support we need (a panel of people, most of whom we have never met, will decide that).
To have other people (and luck) influencing these life-changing things can feel frustrating and frightening. And frankly, wrong.
I hate the thought of my family being discussed by strangers.
We’ve recently gone through a care review. My dreams have done an interesting job of reflecting how this has felt for me. They have included me shouting with no sound coming out; and someone coming in to paint my bedroom bright purple (only the bottom half for some reason – I imagined they’d planned to add a floral border as a tribute to 1994), and me trying to stop them, but failing.
It’s at times like this that advocating for our wider community helps my feelings of powerlessness. That may be through advising on research projects or advocating for better special needs holiday provision. It’s certainly not a selfless act, I get lots from it. Knowing that the words I speak or write may make a difference takes the focus from my immediate situation and enables me to take action. Sometimes it’s a bigger thing, and sometimes it’s using my experience to answer a worried parent in a Facebook group that hasn’t yet had a reply.
Living with uncertainty is a huge part of parent carer life but, in my experience at least, there are many ways to acknowledge it with a nod and push on anyway.