Apart from a few hours out the house once every few weeks for essential plans, I have been mostly housebound this last month. I'm not sure when I moved from mild to moderate but suddenly my world has shrunk again. When I have been able to leave the house, I have used my mobility aids but I suppose ‘look well enough’ to others. I am an expert masker, as many of us are and it is difficult for people to comprehend the struggle it has been to get to and be there or the destruction such interactions can create for the days and weeks to come, including the planning around the endless days being homebound before and after an event.

The invisibility of many illnesses and disabilities can often be mistaken, or ignorantly seen as faking, attention seeking or laziness. All people can see externally are the rejection of invites, the quietness on socials and messaging or even cancelled plans, but rarely do they see the choices being made behind closed doors – a choice between showering or preparing a meal, to eat or be clean. Unhelpful comments made such as “It’s just sitting in the car, you’re not even driving”, “why do you need your wheelchair, it’s just sitting and having a meal out”, “It’s just a few hours” fuel our shame and damage our confidence to be open about our needs and limits.

Boundary setting is often taken as defensiveness, so at what point does it seem like just saying no to plans (albeit isolating) is our only option? If I say yes, and be upfront that I will only be able to come if I am well enough on the day, then I seem like I am being flaky. If I say yes with no caveat upfront, then I either let people down on the day if I cannot make it or I force myself to push through and not only threaten my immediate health but also my long-term baseline. Is someone else’s birthday lunch or coffee and catch up worth risking becoming bedbound? Should I only use the limited energy I have to people please and then be forced to spend the rest of the time hidden from view and struggling when those I used my energy on got what they wanted and no longer have any interest? Are disabled people only allowed to be seen ‘out and well’ when it is for someone else’s benefit? Of course not, that’s a ridiculous notion to think that we would be put in such a situation, especially by those who know and love us, isn’t it? So why then, is it so hard to be able to maintain boundaries and advocate for ourselves to enable positive experiences, restoration and recovery?