During a discussion group this week, I was using my diagnosis as an example of something that I need to be mindful of in my work.
I was asked, ‘Do you find it difficult working with people with similar conditions? Or is it helpful?’ I didn’t have to think about it too long at all before I responded. Parkinson’s makes me better at my job and my job makes me better in how I deal with my condition. My diagnosis is definitely more helpful than I would ever have thought it possible.
The thing is this. I work in a Neurological Ward. Often with people with degenerative conditions. Through the work I have been putting in for myself in relation to my own condition, I feel I am better able to empathise with others and to really identify with some of the things they are feeling. Although I never tell my patients and their families that I have Parkinson’s, I do say that we have had people in our family with degenerative conditions. This is telling my truth, without saying that it is me!
In Social Work, we have a thing called, ‘Appropriate use of self’. That means in a nutshell, that as professionals, we limit the amount of information we share about ourselves. However, it is a matter of professional judgement how, when and what we share. I have shared the fact that I have lived on a benefit and know what it is like to struggle financially. What we don’t do in my role is to talk so much about ourselves, that the discussion ends up all about us! But, by sharing some insights into our own life experiences it helps us to connect and build rapport.
My Social Work training and experience has a huge influence on how I have learned to live with my Parkinson’s. I am able to take some control of my life because of the skills I have learned in my profession. I can think through and assess what I can change and what I cannot. I have developed strategies, like this Blog to give myself an outlet and in sharing with others, to feel like despite my condition I still have value.
Throughout life, especially when we get older we face certain challenges and through facing these challenges we build resilience. When facing Parkinson’s I think to myself of other major events in my life that I have got through. I realise that if I got through those other events I can live with and get through this.
I’m not saying that this diagnosis is not hard. It certainly is. I am not saying that I always get it right and everything is always positive. It certainly is not! What I am saying is that for the most part, I have strategies to cope with the hand I have been dealt. One of the strategies is being honest about how I am feeling and sometimes that means having a bit of a cry from time to time. That’s OK. I think we have the right to more than a tear or two!
My work and experience has given me tools to cope with my Parkinson’s and so too, my Parkinson’s has given me tools to cope with my work.
My journey with Parkinsons 
You absolutely have value. My diagnosis was a total shock to me and never having had any experience of Parkinson’s, I was terrified. I thought that I would get all the symptoms I read about on the internet, pretty much all immediately. I imagined that the degeneration was very swift.
You’ll never know how much I appreciated reading your blog and seeing that a rewarding life goes on post diagnosis, perhaps not exactly the same as before, but it does go on and it can be good. 🙏
You, a total stranger, gave me something that no one else could …the benefit of your first hand, relatable experience.
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Rebecca. Your words have really touched my heart. In expressing how you feel about my Blog, you have moved me to tears. This is exactly what I hoped to do when I embarked on this journey of expressing my thoughts and sharing them with others, in the hope that I could make a difference. Thank you so much for opening up to me and letting me know that you value what I have to share. Just as you have needed support, comments like yours buoy me up and make me feel that in some way, maybe this is part of my life purpose to continue to help others.
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