Behind The Spoonie Society

What chronically ill people want you to know this Christmas

What chronically ill people want you to know this Christmas

Alyx Stewart is a public speaker, author, and dragon boater.

She’s also a 17-year breast cancer survivor. 

For Alyx Christmas brings mixed feelings. It’s a beautiful time of the year, let’s face it. But according to Alyx, for people with chronic illness, Christmas can be difficult. 

And sometimes, it’s made worse by the ones we love. Not that they mean to, of course. On the contrary, they’re often trying to do the right thing. 

“I was having cancer treatment through the Christmas period and my family didn't handle it very well,” says Alyx. 

“I wasn't included in any decisions and felt quite resentful that I was wrapped in cotton wool and basically patted on the head with a, "there, there. Just sit and relax." 

“Only a few weeks before we had had our wedding and control was taken away from me instantly”

Here are three things people with chronic illness want you to know this Christmas.

We want to be included in decisions AND tasks. 

“Even if we are not up to it physically, it is nice to be asked,” says Alyx. 

Being chronically ill means feeling less empowered than ever before and when people don't include you in decision making, it can feel hurtful, not helpful. 

“They mean well because they think you aren't up to it but it is disempowering. 

“Don't ever assume what somebody can and cannot do.”

Please consider our dietary requirements

“We definitely would like our dietary requirements to be considered,” says Alyx. 

Often chronically ill people feel isolated because they have dietary requirements that might stop them going out and enjoying social occasions. 

This can lead to loneliness and isolation. 

“We connect over the sharing of a meal,” says Alyx. 

“When someone enquires about special dietary requirements it shows care, compassion, empathy and love.

“And shows you are valued.”

We need to rest

“Understand that at times, we just may need to retreat quietly and without fuss,” explains Alyx. 

“We may be tired or feeling less than best, but we don't need attention brought to it.

“Don't be angry with us or use guilt if we simply cannot make it to any festivities.”

At the end of the day, Alyx says, it’s all about communication. If you aren’t sure, find out.  

“All people have to do is ask. Simple really.”

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