Carol is a patient leader based in Northern Ireland. She has chronic kidney disease, received a kidney transplant in 1987, and has also been diagnosed with Wilson’s disease and three inflammatory conditions. She sits on the Board of Directors of the Northern Ireland Rare Disease Partnership (NIRDP)
David Gilbert’s blog ‘How Real Can You Be’ encapsulates the ‘emotional labour’ of being a patient leader and poses some fundamental questions:
How can patient leaders remain true to themselves, other patients, their aspirations and the reasons that led to the desire to make a difference?
Can we be real or do we need to fall into step when situations prevent it?
What lies beneath the façade of trying to remain positive, and appear positive, at those times when patient leaders do not feel positive?
How do we handle the frustration and disappointment when we encounter tokenistic gestures?
Do we hide reality away in a virtual filing cabinet along with our emotions and vulnerability because we do not want to damage relationships?
The hope that someday we can be the change we want to be by clinging onto the life in the filing cabinet. Disclosing only small chapters of our experience that we believe are safe to reveal.
Resilience is much more than appearing tough on the surface. There are good times but there are also the bad; and few will see the true emotional impact of the ‘bad’ because we shall be crying in the toilet or wherever we chose to cry. It will be somewhere out of sight.
David’s blog is an excellent reminder of patient vulnerability; that we need to avoid facades, that we should not be crying in the toilet, and patient leaders must stay true to their roots not only survive but to make a difference.