“All you ever talk about is your health.”
Have any of you had these hurtful words uttered to you? I have … and I’m guessing many of you have too.
Yet, (and this is the stinger), some of you – like me – probably make a conscious effort on a daily basis to only divulge the bare minimum of how you are feeling, or lie and say you’re fine … or you might ignore the question entirely, because you’ve learned through experience that the person asking, isn’t actually listening and hasn’t noticed your silence.
Ouch.
Living with M.E/POTS is fucking brutal. Navigating daily life (eg. food prep, showering etc) in a body that feels heavy as a boulder and utterly fatigued to the bones (among a myriad of other symptoms), is hard enough. To then muster the energy to claw your big-boulder-ass through the door marked ‘Quality of Life’ takes the kind of inner strength and endurance professional athletes could only dream of – and people with M.E/POTS are often too unwell to manage. Doing this day in, day out, 365 days a year, every damn year … is utterly draining, and for many, cripplingly isolating.
(Wow, this is a cheery post! Euthanasia, anyone?)
‘Compassion fatigue’ is so common within relationships. Be it partners, family or friends – for some, there’s simply a limit to how much compassion they have in the tank before needing time to ‘re-fuel’. And that’s okay; chronic caring can be a lot to handle, and sometimes people need a break.
Nonetheless, playing down our symptoms, lying about how we feel, and/or silencing ourselves completely, is a double-edged sword. On the one hand, it can actually feel quite liberating to NOT talk about my health. I’ll admit, sometimes I get bored of listening to myself talk about it too – which makes it easier to show compassion for the other person’s compassion fatigue. But on the other hand, feeling like I SHOULDN’T talk about it, simply compounds my feelings of isolation and drops a massive steaming turd onto my self-esteem.
So, yeah. Talking about our health vs. showing compassion for compassion fatigue. It’s a balancing act. And it’s tough. I don’t have all the answers – but in my experience, it’s a bit like a see-saw. It’s a two-person activity, and someone will always be banging their arse on the ground while the other is soaring like a bird. But as long as we take it in turns – we’ll sometimes stop for a nice chat in the middle.
Thankyou Emma for your post/posts. I have had ME/Fibromyalgia for 8 yrs, and in many ways, my journey has been similar to yours.
I really get the balancing act, between being your authentic self, saying how you really feel, and being mindful of the other person’s ability to be there and listen..again.
I’m a recovering people pleaser, and these conditions have really highlighted how much I have suppressed my own feelings, thoughts, desires etc. It takes courage to sometimes say, ‘I’m having a shitty day/days/weeks, and in fact I just need…a helping hand, a kind word etc.
At the same time, I’ve seen the almost concealed eye roll in others, and it can really inhibit speaking up about how I really feel.
A lot of the time I do a good job of concealing the fatigue, pain etc. Yet compassion works both ways, towards myself and others in my life. As you have have written Emma, it’s a balancing act and it can be really tough. It really helps to know that you and others with ME/Pots/Fibro and other conditions, are experiencing similar challenges. We’re not alone..thankyou Emma♥️