I, like many people with invisible disabilities, live with chronic illness which means that people outside my home only ever see me at my best. It also means that I live with a constant state of mental fatigue, short term memory issues (made worse by pain medication), and general fatigue, meaning I spend more time than most people sleeping. On top of this basic level of mental fatigue you then have the addition of managing a schedule of appointments from different departments at different hospitals, along with different medications that have to be taken at different times of day and by different means (something common across many people with disabilities or chronic illness). This requires a lot of logistical planning and coordination which can be particularly difficult when your brain is already struggling with keeping track of whether or not you’ve had breakfast today.

Another unseen pressure is the uncertainty we often face around our disabilities and/or our chronic conditions, for many of us our conditions, though chronic, are still dynamic and so vary day to day and can also still deteriorate over time. So we’re often managing anxiety and worries about upcoming appointments, the results of which will determine the direction of the next stage of our journey with chronic illness. It’s these stresses and strains on top of managing the physical side of our ‘invisible disabilities’ that I think remain almost double as invisible. Because even when we have awareness weeks like this one we primarily talk about our physical symptoms, and rarely about the mental struggles that come with them. This week my carer came to see me with a cold, whether or not I caught it from her, something caused me to crash out for 4 hours in the afternoon, as if someone’s flicked a switch and I went to sleep sat up in my profiling bed with my laptop on my lap. This is how I woke up 4 hours later, with appalling neck and back ache.