How many times have we been told to “suck it up!” Or “Shake it off!” And keep going? Well, I for one have heard it so many times that I expect people to say it all the time now, so I often don’t even bother sharing an event or difficulty anymore. It seems pointless. 

It’s also the advice that people who have never been in the circumstances or gone through the same thing tend to give. Which, makes it harder to hear. 

However, I wonder how much it would be appreciated if it was said to someone who lost their job, their spouse or their home? It would seem insensitive wouldn’t it?! 

Today I took my husband for lunch to celebrate Father’s Day and while we were in the cafe my tremor started… Of all the times!! 

I had barely managed to dress and put a little lipstick on and I didn’t want to push my luck, so I kept it simple and focused on seeing hubby smile as he devoured his favourite dish… The thought of it kept me going. 

The tremor not only meant that everyone could see me shaking away, but it also made eating impossible. So I didn’t. 

The amount of embarrassing events have been slowly piling up for a decade now. From falling, shaking, vomitting on myself to wetting myself; And everything in between. My invisible illness becomes visible to strangers when they see me struggle to hold a cup or when I cry with pain… And I truly hate it. 

There will never be a time when I feel at peace with the sight of strangers seeing me in these situations, the only thing worse is probably having someone I know see it. That somehow feels more personal. 

I can forget the shocked looks on a strangers face, but I agonize over the look on a friends face. I try to joke or make fun of it but the reality is I don’t like it and it hurts me deep down. 

I try to shake it off  but sometimes it’s just not that easy. 

I recall wetting myself during a test at the hospital and although the staff have probably been in many embarrassing situations with many people, it doesn’t make it easy on me. Nothing does. 

Except. That it’s not deliberate. It’s not my fault. I can’t control it and therefore in these moments I can honestly say I am doing my best. 

Shaking it off and sucking it up is something that I have been doing for a decade now and I will probably have to do for the rest of my life. Shaking it off when I can no longer do something. Sucking it up when another symptom shows up to make things harder…

But it’s not easy. 

And I really think I would rather that people say nothing than try to trivialize it. 

A resilient character is something that I have put much focus and effort into but it is also a work in progress. 

These events are also some of the reasons that I tend to spend more time at home and alone. It is far easier that way. Easier when you need help to eat, brush your teeth, dress or to toilet. 

I have a deep admiration for anyone who has shaken it off and stumbled on despite a body that tests you daily. And it is also why I have immense respect and love for this chronic family and community to which I belong. 

Gentle hugs, 

Trish.