Local hero (wild theme)

You can’t keep quiet for ever. It’s time to unmute and tell people about your new condition. But what do you say? And to whom? Here are some examples. 

In my last blog Do you want to know a secret? I spoke with coach Sue Jackson about the difficult conversations we all need to have in times of crisis.  In this, the second of two articles, we help you rehearse your lines.

In difficult conversations there are common outcomes that people seek. These include:

• to be listened to with calm attention and kindness
• to feel supported and respected in your decisions
• to determine what happens in your life.

Let’s begin with your partner and family: I’m lucky with mine – neither my husband nor my daughter made a drama out of my diagnosis. But for some people their partners’ and families’ own fears and experiences mean they can feel overwhelmed and find it hard to manage their emotions (initially) in this situation. It’s important to find time to talk and listen. Sometimes that’s easier on a walk, sitting on a bench in nature, or sitting at 90 degrees to each other. Showing sadness, despair, fear and expressing loss are helpful if the other person will listen without trying to artificially make it better or telling you it’ll be OK.

Example: “I feel … and what I’d like at the moment is …”

“How do you feel about this? What do we need to do together?

With your employer and colleagues: You may need to adjust to your working day, and delegate to other people. Your employer isn’t going to appreciate you soldiering on as if nothing had happened until things reach crisis point. If driving or operating machinery is a big part of your work, you’ll need to make sure you are still safe to do so, as this could affect your employer’s insurance premiums. It’s important to find out what support is available to you, either by legislation (e.g. disability, cancer) or your employer’s conditions of service (flexibility in/reduced hours of work). Your GP can be a valuable support in this.

Example: “Please can we discuss my workload? I want to find out how I can best work with you and the team within my new limits.”

With your social circle:  Good friends will probably have noticed your gradual decline and will be relievedthat you are now able to do something about it. They’ll want to know how they can help you – and when you want to be left to help yourself.

Example: “I appreciate your offer to help. Please can you give me a lift to swimming on Tuesday?” Or: “I’m not sure at the moment, but I have your number, thank you.”  

You will probably want to have a sense of control and not feel overwhelmed. If you are undergoing treatment, you are tired or your time is in great demand, you may wish to say that you will keep people informed as a group.

With your interest group: Keep doing the things that you love doing, even if you have to change a few things. For example,don’t resign from the golf club because your swing is weak and your handicap is slipping. Stay in touch with your golfing buddies and take a few lessons from the club pro.

Example: “I can’t lift the trombone any more, but I’d still like to play in the band. Please can I try another instrument?”

With friends you bump into in the street: Maybe keep the white lies going for now, but think how you will tell them as soon as you can. Fix up a coffee date soon when you can talk at length.

Example: “I have something I’d like to share with you and I want you to hear it from me first.”

To a lot of people at once: ‘Coming out’ on Facebook was the best thing I did. It generated a huge surge of likes and loves which have sustained me ever since.

Examples: “You may have noticed that …” 

“It’s been quite a while since …”

“Well now I can tell you …”

“Please don’t feel sorry … I don’t need sympathy, but I may need some practical support …”

Jeremy Paxman recently acknowledged that Parkinson’s is ‘a bit of a bugger’ but his sense of humour appears to be intact, which is, in my opinion, half the battle.

With people who have more health problems than you do: I can yak on forever about me, me, me and Parkinson’s. I’ll say, at the end of a conversation, “And how are you, by the way?” Then I suddenly realise that the person I’m talking to has bad news of their own – and it’s much worse than mine. Not ‘by the way’ at all! 

Example: “Goodness, I had no idea! And there’s me, just talking about myself! Do you want to tell me about it?”

With your health professionals:  Make a list of questions for your next consultation. Prioritise them – better to tackle three issues well than ten superficially. Instead of focusing on symptoms, tell your health professional about the impact those symptoms have on your life.

 Example: “I’d like us to share decision making about my care.”

“I’d like to be able to … but I’m a bit … at the moment”

“I’ve read in [peer-reviewed journal][not tabloid newspaper!] that … have you seen it?

You can find more about shared decision making in Chapter 8 of Empowerment in Health and Wellness, see below.

Here are Sue’s tips for keeping grounded and calm in your next consultation. Without those pesky stress hormones you’ll have a clear, logical mind.

• Keep your feet flat on the floor.
• Think about pushing your weight into the chair.
• Sit up and breathe deeply – focus on breathing into your belly (It’s helpful to practise this beforehand and can be a calming thing to do at other times, too).

Finally, find the right words to say to yourself: Give yourself the same kindness and care you’d give to a good friend. When you are kind and compassionate to yourself, you can share the love.

Trust yourself – you can manage this.

Play > Wild Theme > Local Hero > Mark Knopfler

This one is a special favourite of mine. It’s ‘wild’ as in ‘a long way from anywhere’, not ‘loud and scary’. Thirty-four years ago I played it over and over during a long and difficult labour, and I still play it to keep grounded and calm.

For Sue, it evokes memories of journeys and holidays to Scotland’s west coast and isles over many years. She says:

“This track from way back when reminds me of children’s voices as they play completely absorbed by the place they are in, the rhythm of waves gently breaking in shallow sandy water, looking out to sea and the awesome beauty of west coast landscapes.”

Sue runs many of her client sessions out of doors, which helps to connect people to nature and to themselves physically, mentally and spiritually. She says:

“Being in nature reduces our stress and anxiety and increases our resourcefulness, mind/body connection and sense of belonging.”

Image by Tina Koehler from Pixabay 

Empowerment

Sue Jackson is the co-editor, with Andrew Parsons and Jackie Arnold, of Empowerment in Health and Wellness (Panoma Press, 2021).  The book is a huge resource of ideas and proven ways to enable people to take control of their own health and professionals to support their clients in times of illness, stress and loss, when being empowered allows us to navigate uncertainty more competently. The book is valuable for workplaces too, particularly to support employees’ mental health.