For quite some time, I've noticed that most people cannot empathise.
Empathy is defined in the Merriam-Webster online dictionary as:
"the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also: the capacity for this."
Those who have lost children, like we have, will know that it is rare to meet someone who can truly empathise with you and your loss. In fact, the only people I've met who can do so, are other loss parents.
It's been nearly 12 years since our first loss (Freyja) and still it shocks me how little people can or will show any empathy or make any effort to.
Having recently been diagnosed with MS has reminded me of this lack.
As with loss, when I mention I have MS, people are quick to immediately jump in and tell me about their friend and/or relative and/or neighbour and/or someone else who had MS and lived a "perfectly normal" life. They feel that this is showing empathy. They feel that this shows they know and understand. Whereas of course it shows anything but.
My mother (typically) immediately reminded me that her biological mother had MS for most of her adult life (as if I needed reminding), so therefore she knew everything about MS. This is despite the fact that my mother lived with her foster parents from age 5. Also despite the fact that her biological mother died in the early 1970's. But still, despite these issues, my mother knows everything about MS. She knows all about the treatments available too (despite these not being available back then). In addition, she had a friend, who very recently died, who had MS for many years and "lived a perfectly normal life".
In fact, my mother had nothing remotely sympathetic to say to me when I was diagnosed. All I got from her was "well, you were expecting it". That's it. Not even a hug. Not a sliver of empathy. Nothing. Nada. Niks.
Even my MIL, who has shown more empathy than my mother has about my diagnosis, has been quick to point out that she has a friend (of course) who has lived a "perfectly normal life with MS" and has only recently started to have some minor issues.
There is such an incredible lack of understanding about this disease. And yet it seems everyone is an expert. The facts are that everyone diagnosed with MS is different. Everyone's challenges with MS are different. Some people do live fairly normal and lengthy lives, but others don't. Others live with many challenges, and some live challenging and much shorter lives.
When I first mentioned to my sister that the MS diagnosis was a real possibility for me, she said "yes, Mum told me that you think you have MS". I politely told her that actually a
neurologist and
radiologist thought I had MS. I politely told her that
they thought I had MS because of (i) symptoms which I had described to him, and (ii) evidence of demyelination shown on a MRI of my brain. She seemed quite taken aback, and then told me that "Mum hadn't mentioned that". It didn't surprise me that my mother hadn't mentioned that. My mother knows everything about everything, including MS (because, after all, her biological mother had MS). What did surprise me is that my sister took my mother's word as gospel without thinking to maybe check with me. And, again, there was no empathy. None.
I learned quite some time ago that people are all different. The person we are at any one time is constantly changing and evolving. As we experience different places, different persons, different cultures, different events, we become different people.
I guess the gift of empathy is one where we can look at all those differences and yet still be able to imagine and possibly understand what life must be like for someone else. Someone who has totally different experiences to you.
The ability to imagine and understand without having experienced.
And that, I'm continuing to find, is quite rare.
You don't get over losing a daughter or a son.
There is no cure for MS.
Try to imagine that.
