September 8, 2016

‘I get tired too’

‘I forget things - it comes with old age’

‘Everyone gets pins and needles’

‘My mother’s cousin had MS and she …’

If you have been dx long enough, someone will say something that you might think is stupid, insensitive, repetitive. But (and there is always a but) … what if they are just trying to empathise and understand?

I know that sometimes these conversations make us angry. There are only so many times we can be sent the link to the wonder cure. Or times we answer questions (that seem like accusations) over what we eat, what we did to get MS, and why we haven’t been cured like someone’s second cousin twice removed.

Just for a moment, let’s use an analogy.

Your best friend has just told you she has breast cancer (or some other disease).

you want to relate to them. My mum/aunt/sister/friend/colleague at work also had it.
you want to give them support or hope. They had a rough time, but lived another x years or decades.
you want to give them helpful advice. They took up yoga/walking/eating organic/had a positive attitude.

Sound familiar? It’s harder for us because they and we know - there is no cure for multiple sclerosis. We cant be fixed. And they know it. And they love us. And they want to support us, help us. So they offer advice. They try to make us feel less alone by talking about others they know of with the same disease. So, next time when you hear those words, match it back to the stages of grief.

Denial:

‘But you dont look sick’. My response is ‘I also dont look my age, but there it is.’ ‘I get tired too’. The only explanation I’ve had is to explain the ‘spoon theory’. Or just acknowledge their tiredness/pain. ‘Everyone forgets things - it is old age’. Help me out here - I still dont know what to say

Bargaining:

‘My mother’s cousin had MS and she …’ Deep breathe, listen and let them explain and work through their journey. Ask questions - how long before DX, how long to progress? What was her EDSS? What were her visible/invisible symptoms? At some point they will run out of answers. Then you can redirect with sympathy ‘Your poor mother’s cousin’, empathy ‘I know what it is like to live with MS’, go a little technical ‘MS is such a stupid disease, everyone gets different symptoms and can respond to different treatments - I’m lucky I have a good neuro and medical support team who are looking at how to treat me’.

It isn’t fair, but how we support those around us, will determine how they support us. If we are angry, frustrated, dismissive, then there is a chance that we push away the people who love us the most.

But, here is a safe place to vent … what are the comments that you’ve heard and how did you respond?