The problem with doing well… a hidden disability

I have been open from almost the first day of diagnosis about my having Parkinson’s. I have shared it with my family and friends and also my colleagues at work. At first people were very sympathetic and it felt like they understood that I might be more challenged by things than previously. However, just like when you lose someone you love, people acknowledge your grief initially, but they seem to pretty much forget about the hole in your life caused by that loss. Having a diagnosis of Parkinson’s comes with it’s own grief and loss too.

As time has gone on and I continue to manage quite well with the help of medications, it feels like my team forget that it is an ever-present part of my life.

Today we had our usual Tuesday team meeting where we discuss patients. I am covering the whole ward for Social Work – which is a tough ask – while my colleague is away. Plus, I have some very complex patients with issues I need to discuss at the meeting so that I can get support and information on how to proceed. Following today’s meeting a senior nurse came to talk to me to tell me that a team member had made a complaint about me. The complaint was that I was basically taking up too much time in the team meeting asking questions and providing information.

I found this upsetting on a number of levels. First of all, I need my team behind me when I am trying to work my way through things. Secondly, as I said to her, I have always processed information better by talking things out. Now with Parkinson’s it takes me longer to process information and under stress this makes it worse. I reminded her that my diagnosis of Parkinson’s means that I may take longer than others to absorb information. That it feels like the team have forgotten about my diagnosis and how it affects me. Basically, it feels unfair that not only am I in a stressful job – and doing the work of two people – but that in order to safely cover the work I need to talk it through and at least one member of my team has complained about my need to do so.

I am trying so hard to continue to do my best at work, but days like this make that hard sometimes. It is hard to have a condition that people can forget that I have and to feel that they don’t understand how hard it is for me sometimes.

I hope that the majority appreciate my work and my efforts to support my patients, their families and my team. I only hope that I can get the support that I need too!