A few months ago a friend told me I needed to stop “being a burden” on those around me & find somewhere with round the clock care to live & accommodate my disabilities. Knowing no such place exists for someone like me - I gave them a challenge.

I told them that I had looked for such a place many times - and I’ve come up empty because people like me (relatively young with unstable chronic illnesses) fall through the cracks. We aren’t considered when care homes are being established.

We have homes for the elderly, rehab centres and hospices but almost nothing for a young person who isn’t imminently dying but also has no expectation of improvement. I challenged this friend to find me a place - within a reasonable budget - and said if they did I would move.

Of course they were unable to find anything - and in fact even when they tripled their budget they came up empty. There was one contender that provided a brief glimmer of hope - but as soon as they discovered my heart condition they said no.

The reason? “She’s too unstable and we don’t have adequate monitoring. She should be in hospital or try hospice.” Most chronically ill people know that hospitals are short term solutions & will often discharge you before you’re strong enough to be on your own.

And hospice? You can’t enter hospice unless you are imminently dying. So around & around this friend went… hitting all the same roadblocks I’ve hit time and time again. Finally they asked if I considered private in home nursing?

In home nurses where I am start at around $36/hour. If you need round the clock care that’s just over $6000 a week. Clearly not an option for the vast majority of people.

Finally my friend conceded that I was right and there was no magical place where I could have round the clock care & cease being a “burden” to those around me. They were flustered and apologetic & kept saying “I just assumed you hadn’t really looked”.

Therein lies the problem for so many of us - our friends & family always seem to assume they know better and/or that we have simply failed and not “tried hard enough”. The reality is we often spend all our energy looking for solutions - but those solutions simply don’t exist.

I thanked my friend for apologizing & for their efforts in trying to find a place - but I also asked them to consider how it feels to be called a “burden” just for needing support to survive. To be told you needed to go away & stop “bothering” friends & family?

Of course my friend didn’t have an answer - just uncomfortable silence followed by some muffled apologies. I share this story to implore people to stop assuming disabled people haven’t already tried the things you’re suggesting.

This doesn’t mean it’s wrong to make suggestions. But if we tell you we’ve already tried it and it’s not an option - believe us. It’s exhausting spending your days dealing with chronic illness - we don’t need to be explaining ourselves to people who should have our back.

Lastly - disabled people are NOT a burden. There’s nothing wrong with needing help to survive. Telling someone they should feel bad about receiving that help is an unkind thing to do. Please offer help or keep quiet. Most importantly - believe us when we say we’ve tried.

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