Jane’s Journal

Five good 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.

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