Now there’s a statement! I was reading a post on a new Parkinson’s Facebook page that I have just joined and it struck a chord with me. Both personally and professionally.
Here is what they had to say
“I’ve heard that no matter what you’re going through, someone has it worse.
I don’t like that statement. I’ve never liked it. It’s emotionally dismissive, and it teaches that our personal struggles are insignificant.
So we hide, and refuse to cry out, and we try not to burden others with our pain.
Someone might have it worse, true. But we’re all broken, and we’re all human, and we’re never alone. Never.”
I often hear similar statements from patients and their families that I work with. I always think it is dangerous to compare ourselves with others, plus we only see the side of a person that they choose to show us. Just as the statement, ‘There’s always someone worse off’ is challenging there is also another opposite statement that has been made to me is ‘they are managing so well’ or ‘I wish I was coping as well as them!’ Again, we can’t see inside other people’s lives and know the challenges that they might face. The losses they might have suffered, the grief they are working through. By the same token, especially in the early days of diagnosis those of us with PD may not present as having any issues. So, too our family and especially our partners may not show to the outside world that things can be tough for them too.
I agree that saying ‘There’s always someone worse off…’ minimises the huge impact this condition can have on our lives and those who care for and about us. Our struggles may not always be obvious and sometimes I know I can almost forget I have this condition, but it is a rough road we travel and our struggle is hard at times and should be acknowledged. It certainly is bad enough, without thinking we have no right to complain because others – we think – may have worse things happening in their lives. We have just as much right as anyone to have a bad day, maybe feel a bit sorry for ourselves, get grumpy with those we love (sorry) and to feel it’s all too hard.
Today I was talking to my Social Work colleague and she turned to me and referred to a comment made by one of our other colleagues at lunch yesterday. I must have said something that I noticed now as an effect of my Parkinson’s. My other colleague then made a comment along the lines of ‘Oh, we all have that! It’s not just a Parkinson’s thing!’ The colleague who I work with directly said to me today, that when she took a step back and thought about it, the statement made minimised my experience by normalising it as something that happens to everyone. She acknowledged that what I am experiencing is different and that she and others can’t possibly know what that’s like and that comments like ‘Oh we all have that!’ are not necessarily helpful or supportive.
I appreciated her taking the time to think that through and the possible effect on me. It is true that I am in the early days and perhaps my colleagues by making such comparative comments are trying to be supportive. However, it can make it seem that they don’t want to hear about how life with Parkinson’s is for me and the things I find challenging now.
We have a right to say, ‘this is tough’ or ‘I’m not coping’ and to have that acknowledged and honoured. Our ‘stuff’ is relevant and difficult and doesn’t need to be compared to other people’s stuff.
What we need is to be heard. Not to be given the impression that our experience is the same as everyone else’s, because it absolutely is not!