Posted by: ayrshirehealth | February 3, 2016

The Spoon Theory by @YourKirstyness

Self Management

I can always remember the events leading up to my diagnosis of Ulcerative Colitis (U.C.) specifically the day that I was admitted to hospital.Colitis

I won’t go into my history of long term conditions, I can talk about my health until I am blue in the face, but I will let you know this, at the tender age of 7 in 1997, I was diagnosed with Ulcerative Colitis (a form of Inflammatory Bowel Disease) and in 2010, I was later diagnosed with Primary Sclerosing Cholangitis (a form of liver disease) which is associated with Inflammatory Bowel Disease.

It’s not been easy over the years, however I’ve built the skills to self manage my condition, one of the key components being communication with my employer. One thing I’ve learned about life with two long term conditions is that people don’t know what the condition is, unless it’s spoken about, and I think that’s the same for most, if not all, chronic/long term conditions.

Work is a huge part of my life and I am fortunate that despite my two long term conditions, I am in full-time employment and actively involved in my hobbies; namely singing and volunteering.

The spoon theory

I’m a community mental health nurse, and while most of you will know the challenges that can bring, for me, there are additional challenges, particularly when I am unwell, as I do not always have the immediate access to a toilet that I require, or the energy to drive myself from one location to the next, but I do it. Spoon theory

I’m a great believer in “The Spoon Theory”, which explains that the difference in being sick and being healthy is having to make choices, or to consciously think about things when the rest of the world doesn’t have to.

The healthy have the luxury of a life without choices, a gift most people take for granted.

In order for me to carry out my job safely and effectively, I self manage my condition, which allows me to have a good work life balance. Over the years, I’ve learned that saying “no” to things, isn’t always a negative and being able to communicate with friends how I am feeling, allows us to tweak our plans and doesn’t leave me (or them) feeling alone or isolated.

Understanding and supportive

In a previous post, I worked 12 hour shifts and requested that this be reduced due to my levels of exhaustion. I was referred to Occupational Health who agreed that it would be beneficial for my working day to be 9-7pm 4 days a week, instead of 3 days a week working 7am-7:30pm. When I started this job within the community, I spoke with my line manger, team leader and occupational health department to devise a plan that would allow me to work within my limits.  You don't look sick

It was agreed that, as mornings are often my weakest time of the day and I can improve as the day goes on,  I could contact the team to advise that I would start at 10am, therefore I rarely have appointments in my diary before this time and due to the team’s flexibility, this works well.

The team respect that I have these conditions and understand that I require various adjustments in place in order to carry out my job to the best of my ability.  As with most employees, I receive supervision every four weeks, which provides me with the chance to discuss my health with my line manager and any further adjustments that may need to be put in place, if I feel it is required.NHSaaa

I’m very fortunate that my employers have been incredibly understanding and supportive and I would tell anyone with a chronic condition to discuss it with their employer, or occupational health department if having that initial contact with their manager is scary.

My skills, my strength, my work

It was through my positive experience with NHS Ayrshire and Arran that I was asked to be involved with a campaign run by The Alliance Scotland; My Skills, My Strength, My Work” and I am honoured to be an ambassador for them as too often I hear people with IBD or PSC losing their job due to their condition, scaring those newly diagnosed and I’m glad to let them know that there is support out there. Alliance Scotland

This campaign aims to assist employers to be more informed about long term health conditions and reasonable adjustments as well as encouraging an approachable partnership between employee and employer.

The campaign was developed as the employability agenda for those living with long terms conditions is increasing in importance and it is recognised that within a competitive labour market, those who have entered and sustained employment with a long term condition are faced with an unsupportive approach.

The campaign is designed to promote the view that the right person for the job is about their attitude, skills and experience, rather than their long term condition(s).

You can find out more about this campaign from http://www.myskillsmywork.org/

This week’s blog was by @YourKirstyness (Kirsty Gibson), Staff Nurse, Community Forensic Mental Health Team, North Ayrshire Health & Social Care Partnership, NHS Ayrshire & Arran.

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Responses

  1. Dear Kirsty
    What an inspiration. Thank you so much for sharing your story. I’m glad you have had a good experience re work/health and hope that your story may enable others who are perhaps not so understanding, to reflect on their decisions/actions

    • Ruth, thank you so much for your kind words, it’s really appreciated.


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