Blog 3: Living with a chronic condition Part 1

Written by Jim Sheehy

Hi.  My name is Jim Sheehy.  This is reallyhuman.ie and this podcast is about Living with a Chronic Condition Part 1.

This presentation might seem for a particular group of people but, strangely, there are very few who are not affected through being in relationship with a person who daily struggles with a chronic condition. 

So if cancer, MS, Motor Neurone, dementia or whatever condition has entered and stayed as a reality in managing your world of communicating, relating, working or if you know, perhaps live with, a relative or friend diagnosed and working through the shock, hurt, rage that these conditions can provoke – well, hopefully, this presentation might help to support you.

Myself, I was diagnosed 25 years ago with a progressive form of MS. So the right side of my body doesn’t move and bladder / bowel have a habit of doing their own unpredictable thing.  This blog is about having a working relationship with whatever condition, illness or disease you have.  We’ll start with basic stuff: people prefer to know exactly what they have so there is a basis of truth and reality: how much of an impact is this going to have on my life?  Is it temporary or permanent? Treatable or just live with it? This event around diagnosis and treatment stirs up a hornets’ nest in the world of feelings.  It frightens and confuses, we get angry at what or who might have caused it, inside our bodies there is a tight knot of pure panic in facing a cold future.

 

Who we are before diagnosis will impact how resilient our response will be.  I was big into sports before MS struck, I knew how to struggle and fight personally and with my team to achieve a result.  I had a personality disorder from my teenage years so anxiety and depression were familiar characters in my make-up. When I was diagnosed, I strangely took it in my stride.  Why? Well, overwhelming negative feelings had already been old and eccentric friends and here was yet another obstacle to manage in life.   If you are fortunate, before the shock of diagnosis, to have had a relatively smooth run, then you will be like a ball ping ponged every which way for the first while until you find solid ground.

So, what have I found helpful and has made sense with people I work with.  There are three life-attitudes we tend to experience, even in the one day.  There is the ‘victim mode’ – this could only happen to me, what’s wrong with me, nobody understands and even less care.  Sound familiar?  And being victim is okay, we all know this zone.  As long as we also accept that two other zones are also inviting me. 

The survivor living with a chronic condition changes the question from ‘what’s wrong with me?’ to ‘what’s happened to me?’  This central shift moves my focus from inside, where I feel tangled up and confused, to outside myself where I’m in charge of seeing, choosing and deciding how I want to manage the condition. Hard to explain – but it works.  It’s tempting and understandable to remain in victim mode longer than is normal – some find that dependency brings a lot of benefits, socially and financially. Even some GPs and consultants can enable you to ‘be and act the victim’ rather than encourage and challenge us to do what is possible, even with our symptoms. Entering ‘Survivor’ mode changes our core beliefs from ‘I am a cripple, a nuisance, worthless’ to ‘I can be and do a million things – friend, Mum, worker, kind, funny …’ The feeling world of ‘sad / angty / depressed / anxious’ automatically, after lots of practice, turns to ‘confident, proud, content, even excited at times’. This sounds like, and actually is, very hard work.  It’s about whether the timing is right for you to do this work and whether you have the motivation and energy to keep at it.

 

We who live with chronic conditions have an inner circle of family, friends, medical team who are amazing, generous and sensitive to our needs.  But a chronic condition can become the dominant energy in our daily lives, dictating moods and behaviours.  So ‘carer and ‘cared for’ equally need to value personal space (how we look after ourselves) with strong and healthy boundaries.  When we communicate, we say positively and honestly what is really going on e.g. the 5-year-old speaking to Mum who is angry and depressed and stuck in a wheelchair: ‘Mummy, I love you lots but I feel sad when you won’t play with me.  Please, Mummy, can I throw the ball and land it on your lap like a basketball hoop?’  Mummy is being called by this little bundle of energy to live with limits – just like everybody on the planet.

It’s really important to note that in the one day, even in one hour, we can float between the victim and survivor zones.  Both are normal so be gentle and compassionate with yourself whether it’s you yourself  with the chronic condition or the carer and friend relating with the person. Not finished yet, so are you ready for the challenge of the third zone?

The third and final zone is the ‘Ambassador of Healing’ or ‘The Warrior’.  Notice when a child enters into a room where her 88 year old grandad, despite his arthritis and other ailments, lights up and hugs the wee child, smiles and listens to her tales of friendship and adventure.  Grandad models for the child how life and love never fade, just have new features.  He mentors her in an amazing way what resilience is about – how she can bounce back from the disappointments and failures of everyday living.  Grandad is a warrior, as brave as any soldier on a battlefield because going out of himself, while in pain, in loving this child speaks of what it is to be really human.

A lot to think and reflect upon in this presentation.  Perhaps spend some time with nature today and be curious about how it comes in many shapes and moods.  Let it hold and contain your fragility and vulnerability, soothe and regulate your pain and distress and, also, speak to you of small beginnings and the shedding of unwanted bitterness. 

Presentations on the 4 zones are also available on video and podcast through the website – see www.reallyhuman.ie

 If you enjoy the material, please get the word out there among those you care for.  You can contact me with comment or suggestion via Facebook at Jim Sheehy Therapy and on Twitter @jimsheehy2017

Take care,

Clarifying Disclaimer:  While the material I am presenting is well-researched and suitable for the general population, I believe each person’s issues and needs are unique.  I encourage you to seek medical and/or therapeutic support if you struggle with an issue or condition that negatively and seriously impacts your life.

Copyright

All material in Jim Sheehy Therapy as presented in video, blog and podcast form is copyright and may only be redistributed with permission of author.

 

 

 

 

 

 

 

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Contact me:

Jim Sheehy M.Ed. MIACP
Leitir
Kilcar
Co Donegal 
F94 WV99

087 2137922

jsheehy@hotmail.co.uk

 

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