“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♥️
Hi Fiona, thank you for reaching out. It can be such a delicate balancing act, being honest about how you feel whilst being mindful of how compassionate (or not) the other person is feeling. The concealed eye roll you mentioned from others can really hurt, and it’s those times when we need to be extra compassionate toward ourselves (which can be hard, because those are the times when our courage suddenly does a runner as a result of said eye roll). Ahhh, the relentless joys of chronic illness! You are definitely not alone in your feelings. I think that’s the only saving grace sometimes, is just knowing there’s a whole community of us (other chronic illness sufferers) out there who truly ‘get’ what you’re going through … and NEVER eye roll!! Sending you lots of compassion and pain-free hugs xx