ME, Shame and Vulnerability

In July every year there’s a day on the farm that conjures up old black and white photographs of English hay time in the summer. Back in the day, the villages would be quiet as anyone who was willing and able would be over at one of the farms helping to stack the hay in the fields. I have photos of this heritage in both my father and mother’s lineage. Nowadays there’s not a lot of manpower needed and most of the feed for the cattle over the winter is from silage (grass stored in a silage pit). This involves a number of tractors, a JCB and some big machinery coming onto the farm and getting the grass from the field and into the silage pit as efficiently as possible while hoping it doesn’t rain. Trailer after trailer deposit huge mounds of grass into the pit whilst the JCB telehandler compacts it and ensures uniform coverage across the pit. At the end of the day after hours in air-conditioned cabs, the contracted crew of men climb down from their steeds and help cover the grass with black sheeting, which is then topped with old tires which have been neatly stacked by my Dad over the previous winter as the pile of grass steadily shrinks to feed the cattle in the sheds. What you have is a rather large slow cooker.



The tyre throwing can be fun, but many of the tyres will have stinky old water inside and if you get your throw wrong you can end up with a welly full of cold water and old leaves. Or when removing them to reveal more silage during the winter, you can have frozen fingers and ice in your boots!

I love and dislike silage making day in equal measure. It’s like the glorious smell of your school field being mowed when you’re a child x50. A number of fields get a haircut and there’s a freshness in the air. Flocks of seagulls appear from seemingly nowhere and scavenge the newly shorn land. Yet now as a person having lived for the last two and a half years with ME I’m left with an enduring pang of guilt at not being able to help fling tyres about the place. This was the same pang of guilt I experienced as a teenager living with ME for 7 years in the 90s prior to my significant recovery. There’s something very physical and masculine about donning a pair of gloves and tossing decades-old Ford Escort tyres which land with a satisfying thud.



Silage day happened here recently and I happened to be outside when two of the silage making men walked past the house after the task was completed. I said hello and we had a quick chat. For better or worse It’s a cultural norm in the North East to talk to people. The probing question/comment I half expected quickly rolled off one of their tongues “You missed the tyres!”. Here was a man with a weather-beaten face, looking at me, a much younger, healthyish looking, if not slightly overweight man and wondering why I hadn’t been at the pit getting my hands dirty. All of a sudden those feelings of inadequacy and an embodiment of weakness and, if I’m honest, shame, tried to take over. What I found myself doing however, was concisely explaining my chronic illness in the space of about 15 seconds. If I do physical stuff, it makes me exhausted, and it is very hard to recover.

I spent my adolescence during the 90s feeling fearful of the attitudes of alpha males who had never heard of ME and seemed unable to access empathy. On this occasion, the tractor driver just acknowledged that it must be tough for me and wished me well while continuing back along the dusty track. I had pushed the shame away and won a minor victory in awareness.

A few days later, however, I did not overcome the shame. A young engineer in his twenties came to install superfast broadband via long-distance wifi from a house on the hill in the distance, which receives it’s broadband via another transmitter from the village on the opposite hill. Finally we’re a part of high speed civilisation and 4k streaming again! We realised we needed to move a sideboard to enable him to put in a new connecter in the living room. In a very short space of time I had to decide whether to call my wife from the kitchen to help and look feeble, or just help him move the thing two feet to the left. I failed the bravery test and weakly helped slide it along (I think the engineer probably did most of the work though!). This had been a particularly good day for me in terms of my energy levels, but the following week would not be, and I knew what I was doing to myself. I already spend about 80% of my time in bed, usually just leaving to go to the toilet or eat, so why would I exert that sort of energy knowing what it would do to me? I’m sure the broadband man would not have been bothered if I called someone to help but in that moment of foolhardiness I gave in to my perceived peer pressure and the shame of having to call for help.

Brene Brown is one of my favourite authors/speakers. She’s an expert on shame and vulnerability and has this to say about shame:

Shame is the most powerful, master emotion. It’s the fear that we’re not good enough.

Brene Brown

Growing up with ME in my adolescence, I now realise this fear of not being good enough or attaining a high standard is something that I carried from that time. I wonder if it’s what drove me, after my significant recovery in my late teens to work so hard at university and gain a first class honours degree. These things bury their way inside us and we experience them popping up at tricky times.

So, living with ME, we not only have to deal with the rollercoaster of new and changing symptoms and swinging energy levels, we have to manage our response to shame triggers, to not matching up to our own expectations and the perceived, or very real expectations that others have for us. We have to make choices to be emotionally vulnerable.

A friend who has ME blogged for Severe ME week recently. She talked about the stark realities of living with severe ME and how it impacts her on a daily basis. I noted that she had been incredibly open about some really personal issues and that there’s a sense that we have no choice but to do so if we are going to raise awareness. We have to be authentic and vulnerable.

Brene Brown talks about how powerful this combination can be:

Vulnerability sounds like truth and feels like courage. Truth and courage aren’t always comfortable, but they’re never weakness.

Brene Brown


Of authenticity she says:

Authenticity is a collection of choices that we have to make every day. It’s about the choice to show up and be real. The choice to be honest. The choice to let our true selves be seen.

Brene Brown

When I write a blog, I spend a lot of time thinking about my words, how I can best convey a message with clarity. Somehow it’s easier to be authentic and honest when time is on our hands and we can polish the final product. Yet every day life is not like that; when confronted with the requirement to physically exert ourselves we are faced with immediate decisions. We have to choose courage to be vulnerable and win a pacing victory or otherwise be aware that our physical health may suffer. This stuff is not easy. We can be fearful of how people will react, especially for those of us who live with an invisible illness.

Vulnerability is not about winning or losing. It’s having the courage to show up even when you can’t control the outcome.

Brene Brown

As I’ve been considering this subject over recent weeks I’ve become more aware of how much my shame responses impact my physical illness. Not because of any perceived link between psychology and ME but because shame drives us to physically push ourselves beyond what is wise, risking an exertional aftershock of exhaustion.

For those of us trying to navigate the chronic illness landscape, may we be courageous in our vulnerability, bold in our weakness and authentic in our choices. We have to work hard just to stay afloat, we don’t need to allow shame to weigh us down further. This illness is very real, let’s not allow shame to lead us to push our bodies beyond what they can take.

Quotes taken from https://www.goalcast.com/2019/06/19/brene-brown-quotes/

4 thoughts on “ME, Shame and Vulnerability

  1. Thanks Daniel, I’ve shared this to my Facebook feed as it sums up how ashamed i feel when I struggle to do things and will push through, even though I know it will be detrimental to my health. I feel embarrassed because I look well and I used to be very fit and go running, horseriding, fencing and swimming. Now I struggle to do 20 minutes of stretching. I work in chemotherapy (at North Tyneside hospital – I live near Amble) 4 days a week but if you get 10 spoons a day to do everything, I probably use about 65 spoons a week just working, then collapse at the weekend. Thank you for your honesty in your blog, which I will continue to follow. I really love the photos. Take care, Sarah

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      1. They’re fantastic, we had them for lunch today. Thanks for the support. Working is hard but I hope I’m coming out of this latest flare up. I went six days in a row before pain & fatigue kicked in. I saw an app advertised on Facebook yesterday called ‘cure’ which looks at the psychology of pain and changes things like how you think about pain. I’m at the “I’ll try anything” point. I tried a tablespoon of cider vinegar morning and evening but that just made me feel nauseous x

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