Education for families struggling with chronic fatigue syndrome (CFS) can be a real challenge, both during the pandemic and beyond. The home-schooling aspect of COVID-19 has reminded me of the struggle my son had with education while he suffered from CFS. He was ill during his early teens (14), his recovery phase was from 17 through to 19 and although his education was delayed by his illness, in the end, he completed secondary schooling and tertiary study. His struggles have made him more resilient and became an education in themselves.
As a mother, my son’s education was a huge stressor. For so long his illness seemed to be getting worse, and answers were beyond us. Countless meetings at school, having to repeat a year, changing schools and home-schooling only added to the trials he and I needed to address on our journey.
Here are some lessons I have learnt, which may be of help with your approach to your child’s learning challenges while dealing with CFS;
- Having confidence my child’s school provides honest feedback, conversation and genuine support is essential. This was not my experience initially, but on changing schools we were met with a much more caring, understanding and student focused approach, which made a huge difference.
- Adapt your expectations to the situation you are facing. There were times where my son just physically and mentally was not able to get the work done. I now recognise, at times I put too much pressure on him as I was so determined he would not be left behind. I was not able to truly understand his level of fatigue and brain fog. This was particularly the case prior to diagnosis.
- Social interaction is important. Over time, friendships were difficult to sustain, as my son rarely got to see his friends. When he did, lack of energy and focus meant connections suffered. One activity which provided social interaction outside the immediate family was gaming. While not encouraging over use, I did recognise these games were an important social outlet, and therefore tolerated more gaming time than I normally would have. I admit there was a fine line, but I feel the level I did allow supported his mental health, and in his case worked out well.
- Accept limitations. I eventually found myself in a place where I gave education a lower priority. My son’s health was always number one for me, but education was a strong second. When these priorities clashed, it was very hard to accept that education needed to be put aside, at least temporarily.
- Be prepared to forge your own education pathway. The gaps in my son’s schooling were addressed as his energy levels started to return. He finished his year 12 through the council of adult education, and chose his tertiary studies based on electronic skills he acquired in his first job.
Every CFS sufferer has a different story. I do not say for a minute our approach is one everyone should take, rather this is a story of my journey as a mother regarding my son’s CFS and the issues I faced in trying to support his education. I hope this article provides you with some issues to reflect upon, and that our journey may shed some light on the one you are facing.
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