Validation Theory

I haven’t updated the blog in a while, but I wanted to write about an amazing TED Talk by a woman called Naomi Feil.

Feil works with older people with dementia. She talks about how empathy can improve the lives of even the most disorientated and withdrawn of her patients.

She differentiates empathy from being “positive” (which is often more akin to denial) or trying to distract a person from their distress. She instead focuses on how putting yourself in someone else’s shoes (without trying to cheer them up, fix or change them) creates a connection that “builds trust, reduces anxiety and restores dignity”.

She calls her approach Validation.

Validation is not about trying to change someone or their situation, nor is it about looking for the silver lining. These things might be side effects of Validation, but they are not the main goal.

If they are the main goal, there’s a good chance that they will block empathy and connection and end up making the person feel worse (invalidated and alienated).

Despite Feil’s focus on people with dementia, I think her explorations in empathy are valuable for all human beings in general, and are particularly pertinent for those of us with chronic illnesses.

When I was reading her Principles of Validation, I was struck by how many of them could be adapted to use in our own Chill Manifesto.

Adapted for us, they could perhaps read something like this:

  1. All chronically ill people are unique and worthwhile.
  2. We accept our members as they are. We do not try to change them.
  3. We believe that listening with empathy builds trust, reduces anxiety and restores dignity.
  4. We believe that painful feelings will diminish if they are expressed, acknowledged and validated by a trusted listener. Painful feelings that are ignored or suppressed will become yet more painful;
  5. We all have basic human needs. These needs include:

The need to restore a sense of equilibrium despite living with chronic illness;
The need to make sense out of an unbearable reality;
The need to find a place that feels comfortable, where one feels in order or in harmony, and where relationships are familiar;
The need for recognition, status, identity and self worth;
The need to be useful and productive;
The need to be listened to and respected;
The need to express feelings and be heard;
The need to be loved and to belong;
The need for human contact;
The need to be nurtured, to feel safe and secure, rather than immobilized and restrained;
The need for sensory stimulation;
The need to reduce pain and discomfort.

I would also add to this list the need to not be confined to the house and to have support outside the home. Perhaps even the need to laugh and have fun.

The needs of disabled people are often called special needs, but this is misleading. Disabled people have the same needs as everybody else. It is just how we access (or struggle to access) those needs that might be different.

Because Validation is not about treating, changing, or curing people, it is not a therapy.

It is more of a philosophy in action.

Chill doesn’t provide therapies, but being among people who understand you is undeniably therapeutic if you are suffering. Furthermore, friendship and friends can resolve some psychological issues that therapies and therapists cannot.

Friendship changes lives.

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Crafts and Pool

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The ‘flu I caught over Christmas was a bad one, and we haven’t met much this year because of it. I always dread getting viruses as I never know how long it will take me to recover or if it will take half the year getting back to where I was before I caught the thing. (Hence the rule not to bring your coughs and sneezes. Three phrases that give me the jitters when someone turns up with a lurg are: I’m sure it is fine; I’m sure it isn’t catching; and, I’m sure it is on its way out. Yes! Out of you and onto me!).

Anyway, I’ve been anxious to get the group going again. Previous to this week we met once at a cafe, once in the evening at a pub, and once at my house to play video games.  I like mixing it up but looking forward to when I can make the meetings more regular again.

This week was particularly enjoyable. It was a good turn out but really laid back. A new person came (who I very much hope will be back), I taught Sarah to crochet, and we ordered drinks and food and then went over to play pool before home time.

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It is going to be an octopus but currently reminds me of this video of a hamster wearing a hat.

TED Talk about ME/CFS

I first heard of Jen when she began work on a documentary about ME. Her TED Talk is newly up and has been making the rounds. She is a fantastic advocate and speaker. If you haven’t seen it yet, this is definitely one to share.

I have to admit, I didn’t watch the video for a few days in case it was too emotional. It is emotional (especially for those of you who have been severe, or if, like me, you recognise some of the people in the photos in the talk to show just how bad ME can be) but it is so good to see this message getting out, and in such a moving and intelligent way.

People like Jen are change-makers, and we need change so bad.

What happens when you have a disease doctors can’t diagnose

Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she’s encountered in seeking treatment for her condition, whose root causes and physical effects we don’t fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.

You can also read an interview with her here.

Happy New Year

I was so glad for our Minecraft server tonight. I was given the ‘flu for Christmas and I am still in bed with it.

I spent the lead up to midnight scouting for animals for my farm. It is really cool sharing the server with other people, and totally changes the experience of the game for me. For one thing, you see all the things people have made and all the thought and effort they’ve put into it. For another, it brings to the game the presence of other human beings. Even when no one else is online, the buildings and farms aren’t just pixelated thingamajigs: they are the creative projects of your friends. With anything I make, I imagine others coming across it and having a look around. I really like seeing what other people have done.

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After I’ve moved the location of my house, I’m going to see if anyone wants to come and explore new areas of the terrain with me.

What has been interesting is that people’s use of the game has been different than I expected. I thought we’d do more things together, but mostly people seem to want to do their own thing. They go on the game at the end of the day for some quiet alone time.

Turns out, that’s mainly what I like using it for too.

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Edited to add pictures.

2016 in 10 Gifs

1. Going to the pub

2. Going to cafes

3. Hot chocolate

4. And that one time we had a picnic

5. Riding out the heatwave at The Star in Beeston

6. Crafting

7. Artsing

8. Breaking open the board games

9. Minecraft

10. Brunch at my house

Here’s to more hanging out in 2017

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What kind of meet up is this?

Oz: We should figure out what kinda deal this is. I mean, is it a-a gathering, a shindig or a hootenanny?

Cordelia: What’s the difference?

Oz: Well, a gathering is brie, mellow song stylings; shindig: dip, less mellow song stylings, perhaps a large amount of malt beverage; and hootenanny, well, it’s chock full of hoot, just a little bit of nanny.

Hooked

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Deli is a veritable trove of unusual jams, artisan crackers, craft beers, and creative kitchenware. Last week we missed it. We met at my house instead. There was a lot of weather and I was feeling under it. We draped the electric blanket over the sofa, grabbed all the pillows, and added several squares to the blanket pile. Only sixty more to go!

We went back to our usual table today. After the obligatory ritual of browsing the shelves and mentally noting potential presents for people we know, we ordered teas and coffees and settled down for a good yarn.

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I think Claire’s square is the success story of the day. Last week, she didn’t want to try because she didn’t think she could do it. I taught her to make this:

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And now this:

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Knowing no one my age with my condition made me feel alone and completely different. My healthy friends don’t always understand how I struggle. Thanks to this group I now know there are people my age.