The National Disability Strategy Ignores Those With Energy Limiting Chronic Illnesses

By By Sophie Mattholie in The Unwritten.

Like many other disabled and chronically ill people, reading the new National Disability Strategy released by the government yesterday left me feeling a little underwhelmed. 

I live with Hypermobility Spectrum Disorder, a connective tissue disorder that is also classified as an Energy Limiting Chronic Illness (ELCI). The Chronic Illness Inclusion Project says that an illness is considered an ELCI if it “[has] energy impairment as a key feature”. 

Those of us with these illnesses have to ration our energy to get through the day, often sacrificing fun things and socialising, to work or go to school. Things that are easy for non-disabled people, like commuting, cooking, or even just having a shower, can be an absolute battle when you have an ELCI.

As someone who has just finished their A levels and will soon be going to university, access to education is a huge passion of mine. I felt it very acutely during the pandemic – I did both of my years in sixth form with significant disruption, but it actually made learning much easier for me. I wasn’t shoe-horned into the two-hour-long double periods on my timetable.

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