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‘I KNOW how you feel’.

How often we say it. How often we hear it. How often we are told it.

‘I know just how you feel...’, ‘...exactly how you feel...’, ‘yes, it is just the same for me...’ and so on.

I am quite sure that it is usually meant to be reassuring and it is certainly true that it can often help a person facing an issue to know that they are not entirely alone in facing it, struggling with it, worrying about it or whatever.

But few of us find the assertion ‘I know how you feel’ to be entirely helpful.

Often quite the opposite.

For, of course, none of us knows, or can presume to know, just how another person feels. We do not share their experiences, circumstances or struggles.

As someone who has a chronic medical condition, I find it particularly unhelpful when someone tells me that they know exactly how I feel. People mean well, I think. But it really does not help.

As is the case with many other chronic health issues, multiple sclerosis has many different symptoms and often (in my case, usually) these can be hidden... invisible to the casual observer.

And, again like many other chronic health conditions, one of the main ‘hidden’ symptoms is fatigue. No, not simply tiredness, nor the exhaustion of having worked hard, nor the sleepiness that comes at the end of a day (or even during the day!). But a sick fatigue, a complete (and sometimes sudden) draining of energy which is utterly debilitating and sometimes physically and mentally paralysing. In my case it is sometimes (but not always) accompanied by ‘cognitive dysfunction’ ... brain fog.

Now just in case anyone who reads this is thinking of running to the phone, coming round with some chicken soup, writing a card or sending me a message or whatever, do not get the wrong idea! I am not talking about how things are at the moment. By and large I am fine just now. No panic!!

But even when I am fine, this fatigue can unexpectedly overtake me and I find I have to pull out of commitments, engagements or plans (whether work or social) at the last minute. I hope that most people understand that this is relatively rare, that I do not pull out of things lightly, that it is utterly frustrating and not at all desirable, and that by managing my energy resources in this way I am more likely to recover quickly and return to normality sooner. I think most of those with whom I work and minister and those who are my friends do understand this, and I am grateful.

I find I need that level of understanding from others. The constant balancing act, monitoring and conserving of my energy resources can sometimes feel a wee bit lonely and I can get it very badly wrong on occasion! So all the support I get is more than appreciated and is part of what allows me to continue to work and to minister (I hope with some degree of acceptance and fruitfulness!)

However, when someone says ‘I know just how you feel’, I feel my spirits sink. For (usually) I don’t think they do.

‘I know just how you feel, I was so exhausted when I got home from work the other day...’. No, that’s not what I am describing. I have felt that too. But this is not that!

‘I know just how you feel, ever since I turned 50/60/70 (delete as appropriate!)

I have felt so tired and needed to have a wee snooze after lunch’. Yes, I can feel that too. But this is not that!

‘I know just how you feel, I had a stinking cold last week and just felt so drained...’. Well, to be fair, that is much closer to the experience... but not quite. This is not that!

When I attend the MS Therapy Centre for a session of oxygen therapy in the hyperbaric chamber, sometimes the group of us who are going ‘under pressure’ in the chamber chat a bit about our experiences. Two common themes are a) this experience of fatigue, and b) the fact that other people think they understand when they really do not.

When speaking to friends who have various chronic conditions or in offering pastoral support to others, I discover that this ‘sick fatigue / brain fog / energy drain’ is common in many conditions other than MS.

My point in writing this is not to claim anything unique for MS, still less to suggest that I am alone in facing this fatigue (clearly I am not!) nor yet to seek a sympathy vote.

My aim is to encourage us all (including me) to avoid the instant ‘I know just how you feel’ response. We don’t.

It is so much more helpful, supportive and encouraging if we simply listen and – even if we do not fully understand what the other is experiencing – seek to be accepting of their situation and understanding of (for example) last minute call offs.

You really do not need to know ‘exactly how I feel’ to be a much appreciated friend and support. If you are really interested

I would try my best to explain, though I would not wish to bore you. But I do feel encouraged and supported when you hear me signal I am not doing too well, and support me in that, and understand when I need to suddenly step back.

Thank you to those who do! It is appreciated.

“As someone who has a chronic medical condition, I find it particularly unhelpful when someone tells me that they know exactly how I feel. People mean well, I think. But it really does not help.

And because I recognise that I can be very poor at doing this for others (and can be too quick to suggest that ‘I know exactly how you feel’!) I am sorry if I have ever said that to you!

I will try and do better from now on...

“You spin me right round, baby right round” Every time I hear that song now, I begin to shudder.

I had decided to go the gym the day the children went back to school in August 2015. Five minutes after beginning a warm up on an exercise bike, I had to give up as my legs were in real pain. Two days later

I couldn’t walk and had a funeral to take. Let’s just say I was grateful to the undertaker for holding my belt loop when I was next to the hole in the ground as I couldn’t balance.

Six days in hospital followed and I was told that the muscles in my legs had started to dissolve. Fast forward 18 months and after having an enforced ten month break from my ministry, I still walk with two crutches, have my own souped up mobility scooter, constant pain, an inability to drive, and a heavy reliance on family and friends.

I have always been a naturally busy person; bouncy some might say. However, the bounce was literally taken away from me. Being unable to drive since the

‘episode’, ten months away from my ministry, stuck in the house except for family and friends rescuing me and taking me for coffee or to the supermarket, it has been a tough time. I’m not afraid to say that there is a very fine line between coping and a real sense of depression about your situation. It is people that make the difference.

As a parish minister I have been able to reflect on what this has meant to me. Overnight, I lost so much contact with people and with my church family. I was told to ‘forget’ about the church as other people would take care of it. That meant that for a full ten months I wasn’t able to attend worship in my own congregation, or anywhere else due to my mobility, as it was felt that as ‘the minister’ people would involve me too much with questions and requests if I attended. It is strange that the church and our systems led to a deeper sense of isolation. That being said, the friends in our church family were great at arranging time to come and see me, or take me out for a change of scenery.

Having an illness and being a minister can be a strange experience. Suddenly you find your illness being played out in public within the community. For the manse family, privacy can vanish in an instant and speculation about the condition, suggestions about what it might be, comparisons with friends who have had ‘something like that’ can become wearing.

It’s not always necessary, nor is it often desirable, for someone living with a chronic condition to hear that people ‘know how you feel’, most of the time it is better for the person living with the condition to know that the other person is feeling compassion towards them. Sympathy rather than empathy.

Equally, for someone with a chronic condition or pain to be told ‘you’re looking good today’, ‘nice to see you out and about’, or ‘good to see you making progress’, when you know you have taken every ounce of strength just to get out of bed, dressed and out, and that you know you look like something that could scare a young child. People struggle to know what to say at times. I tend to appreciate more the people who say to me at the church door ‘take care of yourself, you’re moving slowly and looking sore today’.

“One of the challenges we sometimes face in training is when people confuse Empathy and Sympathy. With empathy the listener tries to imagine themselves into the situation the patient is facing, how they would cope with it and how they would wish to be supported.

I am now back to my ministry, albeit in a changed way. I now have to listen to my body and slow down when it tells me to. I occasionally need to sit and do nothing and let the exhaustion and pain do their thing and that can mean occasionally cancelling appointments or meetings. I have a stool from which to lead worship and funerals, and where I was once ‘bouncy’ with the children and young people in worship, I now sit in a chair and they come to me.

The congregation in Greyfriars have been brilliant at adapting to a changed situation. Things have changed for me, my family and the congregation … but I am still me … just a little bit different … and I now know that exercise is officially bad for my health.

The Rev Bryan Kerr Minister at Lanark: Greyfriars

Eleven years ago NHS Tayside Department of Spiritual Care developed a programme to support patients in GP surgeries who needed someone to listen to them.

In these hour long appointments they didn’t need or receive advice, they didn’t need to hear of shared experience with the listener, they just needed to talk about their own hurts, fears, anxieties and concerns which were affecting them.

Who came to the Do You Need to Talk listening service? Bereaved people, carers who were giving of themselves in the care of spouses, parents or disabled children, and people with long term conditions who to the eye looked fine, but were coping with multiple issues.

We developed our service using what we knew worked with our patients in hospitals, and that was to give them time and space to talk. Our chaplains are very skilled in doing this and recognised that to complement their work they wanted to train volunteers, both in hospitals and GP practices. We believe that volunteers bring special gifts and listening skills from their experience of life which can be enhanced by training, and yes, everyone who volunteers with us is required to undertake this so they develop their understanding of the need to listen, how to listen, and how to travel alongside people with deep sympathy.

“Having an illness and being a minister can be a strange experience. Suddenly you find your illness being played out in public within the community. For the manse family, privacy can vanish in an instant and speculation about the condition, suggestions about what it might be, comparisons with friends who have had ‘something like that’ can become wearing.

The need to listen. We all have times when we just want someone to listen to us, and family, friends and colleagues are sometimes too close. They may become emotionally involved, try to protect us, be unable to cope with what we are saying or advise us what will be best for our own sakes. Yet that isn’t what we need.

How to listen. You can’t sit for an hour listening to someone without saying anything! And that wouldn’t help people because they need to know that you are really hearing what they say, the space is all theirs and you are fully focused on what they are saying, so we nod our heads, say things such as ‘I hear you’ or summarise and reflect on what they are saying. One young lady in a GP practice said to me

‘When I say something it sounds silly but when you say it back to me in slightly different words it begins to make sense.’

How to travel alongside people with deep sympathy. Patients tell us that what they don’t find helpful is someone telling them that they understand. The listener is not that person. The listener is not coping with what the patient is coping with at that moment in time. The listener is not facing the same future. They are a different person and no two sets of circumstances are ever the same. So even if you have similar challenges to face, you cannot understand because you are not that person in that place at that time.

One of the challenges we sometimes face in training is when people confuse Empathy and Sympathy. With empathy the listener tries to imagine themselves into the situation the patient is facing, how they would cope with it and how they would wish to be supported. Yet that turns the focus onto the listener, not the person who needs to talk. We need our listeners to be able to set their own feelings aside and instead feel sadness for the person who is telling their story, but never to let this sadness overwhelm them for then the meeting is about the listener and not the person who needs to be listened to. The focus must always remain on the person who needs to talk.

Gillian Munro Head of Spiritual Care, N HS Tayside