Snapdragon Life helps you rekindle your creativity, reconnect to the natural world & create a slower, more intentional, more joyful way of life.

You’ve viewed

You haven't yet viewed any products on our store. If you've been here before, you may need to sign in.


Five good things I've learned from having a chronic auto immune disease

five things I've learned from having a chronic auto immune disease

Last week I met a young man whose partner had just been diagnosed with an auto immune disease. He was worried, stressed, clutching at cures.Someone had told his partner that her life was ruined, that she would never be able to do anything worthwhile ever again.

I tried to tell him that just wasn't true. For me having an auto immune disease has brought many frustrations, I have had to change the way I approach things - but it certainly hasn't left me with a ruined life.

If fact I think in a number of ways it has transformed my life for the better. I thought that I would write some of them down.

I am not my appearance.

Auto immune conditions - and their treatment - can alter your body to the point you no longer recognise it. Weight gain, bad skin, bruising, moon face, hair that falls out in handfuls. It is so swift and erratic that you cannot tie yourself to it - that whole moral weight that women in particular tend to give to their appearance has to be put aside. I may not like having bruised arms, I may roll my eyes if I can't fit into clothes but I never think it is somehow a character failing.

My body is amazing.

My body has several parts that have completely broken down and the compounds that those bits are meant to tailor make to suit my life are now taken in tablet form. I am a jalopy tied together with string, a baked bean can as an exhaust, the wrong grade of petrol in the fuel tank. And yet it goes . . . it splutters a bit . . . sometimes it stops on hills but mainly it goes. When I hear people hating their bodies, beating up perfectly whole and working bodies, usually for some aesthetic 'failing', it makes me want to scream at them.

Becoming a body whisperer.

Having an auto-immune disease isn't simple. Symptoms - even things that look like reactive physical symptoms - are tied to stress and food and tiredness, sometimes they seem to react to the ether. Learning to be aware of how my body signposts potential issues - a flash of blurred vision, a wobbly knee, a sudden stutter - has made me aware of how it flags non physical things too. The dodgy promise, the bad idea, the thing that will compromise my values in return for an easy life. It is a useful trick - to be able to still myself, sink down and take the advice of how I am physically feeling decisions in my body as opposed to my mind. A superpower.

Sidestepping the productivity machine.

In the same way that having Addisons etc. demonstrated my value cannot be in my physical appearance, it also made it clear that my value cannot be my productivity. This is so much the opposite to the current post industrialist capitalist mantra that it immediately flings me out of that system. All to the good. I thank my good fortune daily that the Internet allows me to work and connect in a way that probably wouldn't be physically possible. Perhaps in the past I would have felt cast out onto the scrap heap, now I can simply dust off the tired productivity trap and walk the other way.

Sleep appreciation society.

Sleep, rest, taking it slow, sitting still - these are the things that recharge me. It is a visible thing - you can almost see the lights on the battery bar coming on. I have learned to leave gaps in my day for naps, to value an early night, to wake slowly. Science is catching up with this - the amount of brain repair and consolidation that goes on during sleep. The way that most people sell themselves short.

Asking for help.

I put this last because it has personally been the most difficult, but also because it transforms both my life and that of others. Insularity and independence have somehow become deep rooted into our lives - and the longer that goes on, the more difficult it becomes to begin asking for help. To be the person who says - I am tired, I cannot carry heavy weights, I need help - creates connection through vulnerability. It also, as a side note, creates children who are empathetic, practical and sensitive.

When I was writing out the draft for this post I realised that all these benefits are the very things that we now realise are missing in our busy C21st lives. That perhaps being sleep deprived, productivity machines, judging our appearance harshly, moving too fast to listen to our guts and never asking for help is actually the true chronic disease of our age. Having Addisons disease and CLL changed my life - there is absolutely no doubt of that and at times I have been terrified, frustrated, despairing - but they certainly haven't ruined it.

You may also enjoy …

Comments: 3 (Add)

You must be signed in to post a comment. If you're already a member, please sign in now. If not, you can create an account here.
Hazel Blue

I am infinitely in awe of you and all you've your achieved Jane, and so very glad we met at the school gate!

jane duthie

Wise words indeed. x

Julie Cumming

A profound and insightful post - should be food for thought for even those who are hale and hearty. Thank you!

Snapdragon social

Pulmonaria “Blue ensign” was one of the first plants I bought for my garden. 

The perfect Bristol blue colour. Bright in the border, beloved of bees. 
Back then - over 25 years ago - it was a rarity, now you can get plug plants of it. 
Does that make it any less precious? 
Not to me.
Were you someone who read blogs ‘back in the day’? Back when they were ugly but with soul?  I’ve been thinking about them - and more particularly the blog rolls that connected them. Curated lists of recommendations, no algorithm, no payments, no angst ridden strategy. 

It occurred to me that I could create something similar by using a playlist on my tube channel - a vlogroll if you like. 

That’s what I’m chatting about this week in my Friday film - about how so many of the people my age making videos are talking about “what you shouldn’t wear after 50” or “how to avoid the appalling fate of looking frumpy” 😂😂😂 And how, as an antidote to all that depressing nonsense, I’m collecting suggestions for an alternative playlist!

Pop over and let me know your favourites. 

I’m also talking about why I’m not sowing any seeds until the end of March this year.
Stained glass colours on the studio windowsill
Another Friday . . . . another sitooterie selfie.
Today's Friday film is about which seeds I am planting in my new dye garden . . .
I dyed my beret to fit with some things I'm taking on holiday. It is an overdye with some onion skins that I had left over from a zoom workshop that I did in The Studio Club. I do love the sense of play that being able to cook up colours gives you.
If you fancy growing your own colour there is a free download of the varieties and suppliers over on the tube . . . .

#fridayfilm #botanicaldyes #dyegarden #snapdragonlife
The second spike is always the best.
Another Friday, another daft selfie. This week Teasel gets into the frame- there is a matching photo of Dixie but she looks frankly terrified. 
This week’s Friday film is about going ‘out out’ - there is a tour of @bettysbeautifullife wonderful exhibition of botanical printing that is on in Kirkintilloch at the moment, and a visit to my parents garden in East Lothian where they have a mimosa tree flowering . We went on a dog walk on Gullane beach and then I attempt to find signs of spring in my own garden (very few but lots of shots of snuffling dogs).

I also address the issue of the tank top I’m knitting being clearly much too small for me. 

All this in just over ten minutes- you can find the film via my links page and I’ll put a link in stories too.
In the spirit of copying to find out how to do something ….. this is the photo I took when I got home from last week’s workshop with @eva_nemeth 

The last photo of snowdrops for this year - laying them roots and all on an old flagstone and trying to work how to get the whites to pop without becoming brash.

And then I cut off the flowers to press for a project and planted the bulbs and leaves out under the hazel tree to bring cheer next spring.
It has been sunny all weekend. 
I weeded and hoed and cleared and felt myself opening up just like these bulbs that I photographed at @cambo_gardens last week.
The absolute joy of the first sunny weekend of the year.

About Snapdragon Life

At Snapdragon Life I help bring the changing seasons into your daily life, helping you slow down, so that you can experience increased well being, calm and creativity.

Find out more about The Studio Club