I Miss Myself

Updated: Feb 16, 2019


There’s something that’s been on my mind lately (ie: this whole year), and then a spoonie friend posted on Instagram about it recently, and then I was ultra-aware of it on holiday – and that’s that your personality changes when you’re chronically sick. Whether you want it to or not. I think I’ve changed in a lot of ways since getting sick, most of them I like. I’m now a more compassionate, patient, and understanding person. I now appreciate all the little things I used to take for granted. But there’s one main thing I miss since getting sick, and that’s me. I miss myself. And that’s a very strange thing to feel. You hear people talk about how they grieve for their old life – but what about the old version of yourself?

More and more I feel like a watered down version of who I actually am. I feel like you’re made up of the stuff you enjoy doing and the people you enjoy being around. Every time you have to give up something due to poor health I feel like you lose a little piece of yourself along with it. It’s small, and you don’t notice it at the time. But it happens over and over and after a while I just wonder what’s left? I can’t do half the stuff I used to be able to do. But in the beginning I figured that that didn’t matter, as long as I was still the same person underneath. Well see now I’m not sure I am the same person. If I could only physically do what I can do now for the rest of my life, but I could gain my full personality back - I think I'd be content with that. I think that would be enough.

One of the most frustrating things about M.E is how slow your brain works all of a sudden. I used to be able to hold an intelligent, enjoyable and entertaining conversation with anyone. Now I struggle to remember what day it is, and making the most simple of decisions sends my head spinning - "What would you like for dinner?" is by far my least favourite part of the day. Sometimes the idea of having a conversation, even with someone I’m very close with, is a bit daunting. It’s a bit overwhelming and I hate that far more than the pain or anything else that M.E brings. Pain I can deal with. Pain doesn’t necessarily impact my relationships with people. Sometimes I don’t think I feel too bad – for example I’m out for dinner and I’m not as tired as I thought I would be and I’m not as sore either. And yet it’s still pointed out to me that I haven’t said anything of any real consequence since we sat down. Why is that? I thought I was doing alright, obviously not. I’ve been having a nice time, but obviously that isn’t coming across. It’s baffling, I do not understand. Why is this the way my brain works now, even if I’m not in a flare? I would like to be an enjoyable person to have dinner with, and it’s starting to freak me out a bit.

I’m not trying to be negative here, I’m just trying to figure this out. Because I’m honestly so confused and I don’t understand how to fix this. I want to go back. I want to go back to the old me that made people laugh all the time and brought my own energy to a group conversation. I’ve always had a thing about being ‘boring’, I’ve always said that’s the worst thing someone could call me – long before I was sick. But now it’s getting harder to dismiss the little voice in my head that tells me that’s exactly what I am now. I would tell any of my spoonie friends that they are categorically not boring because they are sick, in a heartbeat. I wouldn’t think twice. Why is it so much more difficult to believe that about yourself?

To change something I said earlier – I don’t actually think my personality has changed, it’s just a less saturated version. If that makes any sense? A bit weaker, a bit softer, a bit quieter. It’s as though even if you’re having a day where you feel relatively good, your body is still working in survival mode and there’s no spoons spare for personality. That’s an extra – a bonus – it’s not an essential, and so your body just neglects it as being unimportant. But it makes up who you are, and what could be more important than that?

I know full well I’m still a good person, I don’t doubt that. I know I’m a decent human being. I’m just not convinced I’m a fun one at the moment.

Can you relate? Have you found a way to get back to yourself? Help a girl out.

#cfs #mecfs #myalgicencephalomyelitis #chronicpain #chronicfatigue #chronicillness #invisibleillness

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