Reading Carly‘s posts on Ichthyosis awareness month, I’ve been struck by how similar the effects of any disease or disability are on the rest of the family.
It all boils down to the fact that care is a team effort. Top quality care, for the benefit of all (including the person who has the disease or disability), is a team effort.
It means that the entire family needs to understand the condition. They need to work it into their schedules. They need to educate others in their daily life (schools, work places) about the inherent uncertainty of many aspects of living with any kind of chronic condition.
Uncertainty doesn’t mean a bad life. It means a flexible life. Slight consideration from the extended network of a person with a chronic condition allows them to live a full life.
What does this mean for my life? I leave work much earlier than most people in a corporate job do. Why? Well due to not only chronic disease uncertainty but also misdiagnoses, Ben’s been at home for over two years, mostly on his own 5 days week this entire time.
He still needs to eat at regular times of the day, but not to the extent he used to. So what do I do? I leave work most days of the week in time to ensure we get to eat one meal a day together. More importantly, it gives us that fraction extra time per day that Ben’s not stuck on his own. This has allowed us to maintain health & our relationship through tough times.
So if you have the slightest skills in empathy, think about what happens in the daily life of a person with a chronic illness before caring if someone is half an hour late. If you don’t know what they go through, buy them a coffee and ask some questions. Most people are happy to talk about these things, especially if it helps raise understanding and awareness. A great place to start would be following Carly on twitter or reading her blog .
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