This past fortnight, I made a big decision: I cancelled all of my personal support.

Not because I don’t need it. Far from it. But because the reality of receiving it sometimes feels worse than going without.

I’ve had experiences recently that completely crossed my boundaries — including being followed into my bedroom and watched while I undressed, even after I asked for privacy. Add on the constant chopping and changing of new staff, and then being told “maybe we should tell the council we can’t support you” when I tried to raise issues… my anxiety and neurodivergence just couldn’t take it anymore.

As I’ve written before about being both a worker and a service user, the reality of support isn’t simple. Sometimes, it feels like you’re forced into impossible choices.

So while my usual (and wonderful) support worker was away on a well-deserved holiday, I told my agency I’d rather cancel every visit than go through all that again.

The Cost of Going Without

And now here we are, nearly two weeks later.

I’ve realised just how much support I actually do need. I’m burnt out. I’m exhausted. I’ve gone to bed at 6pm some nights because even sitting up was too much. Since my stroke, fatigue has been a constant companion — but these past two weeks have taken it to another level.

The truth is: without the right support, I push too hard and pay the price.

What the Right Support Looks Like

Because the wonderful thing about my regular personal support worker, Dannie, is that it doesn’t feel like “care.” It feels like a friend coming over — who also happens to help me bathe, sort my meds, and keep me from overdoing it. Claire, my social support worker is also the same, it feels like they want to be there, rather than have to be there.

That safety and familiarity is what makes it work. It’s the difference between support that feels like friendship, and “support” that feels transactional — something I’ve also seen in my experiences with social prescribing.

The right support doesn’t just help with tasks; it protects dignity and boundaries.

The A or B Dilemma

So I’m left with the question:

Is the pain of overdoing things better or worse than the pain of having my boundaries crossed by people who don’t know me?

It feels like being at the optician, when they ask: “Is it clearer with lens A… or lens B?” And honestly, I can’t tell the difference. Both blur. Both hurt. Neither feels right.