Opening up about Parkinson’s

Something I’ve learned to understand since being diagnosed with Parkinson’s, is the difference between empathy and pity. I know which one I would rather receive and give. And it’s not pity.

When I was first diagnosed with Parkinson’s, I only told my close family and friends and a few colleagues at work who I felt needed to know. I hasten to add, the reason I kept it mostly to myself was absolutely nothing to do with shame (a misconception I have encountered). I have always been a fairly private, quiet and reserved person, and I just didn’t want anyone else to know. My diagnosis came as a massive shock to me and I needed time to get my head around it – without the added worry of other people’s reactions. I didn’t want people feeling sorry for me. I felt sorry enough for myself at times and it didn’t help.

As I told those people closest to me about my diagnosis, the first reaction was mostly shock. Followed by concern. At first I couldn’t tell anyone without tears, or my voice breaking up, but gradually it got easier.  In hindsight, I absolutely feel I made the right decision for me, to only tell people I was close to, until I was ready to share more widely.

About two years after my diagnosis, I reached a point in my Parkinson’s journey where I wanted to use my experiences to try and help others in some small way. So I slowly started to be more open.

It took a while, but towards the end of 2016 – my year of being bold – I finally felt ready to share the fact that I have Parkinson’s more widely. I wanted to raise awareness of Parkinson’s – in particular the fact that it doesn’t just affect older people and that a tremor is not the only symptom. It’s a very individual condition and symptoms are wide and varied.

As I have come such a long way this year, I was able to post on my Facebook page that I have Parkinson’s, together with a link to my first blog (My Parkinson’s journey – chapter 1) and to say that I now help to run a Facebook support group which is all about being positive, motivated and happy.

So that’s my side of the story, what about other people’s reactions?

I have been truly touched by and am very grateful for all the encouragement and support I have received. And I am especially grateful for all the positive reactions to my blog. Thank you to all of you.

Even though when I shared my news I spoke about positivity and how far I’ve come, I did receive one reaction along the lines of ‘So sorry to hear this. It’s a terrible disease. I understand what you are facing because I know someone with Parkinson’s.’ I did appreciate the concern expressed. However, from my perspective, it felt like pity – which has always been the one thing I didn’t want. And although I absolutely do not believe it was intended that way, in all honesty, it was a little hurtful to be reminded of how terrible the disease I am living with is. I personally don’t need reminding. I live with it – and all the challenges it brings – every day. If I focused on the negatives, I would probably never get out of bed every day. Instead I am choosing to focus on the positives and I believe I am living well with Parkinson’s – with support from my family, friends and colleagues and others living with Parkinson’s (members of Start Living Today PD – the Facebook support group I help to run).

One final thought about ‘understanding’. It’s not all black and white, but here’s what I believe. No one can truly understand exactly how someone else feels. Even if we are in the same situation. Because we’re all individuals and we all think and react differently. But what we can do, is to show support and empathy.

 

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