The secrecy of Chronic Fatigue

There’s something so secret about chronic fatigue. Not only are there the literal physical secrets – the way you look ‘fine’ yet feel like shite – but there is the chronic fatigue lifestyle that just invites secrecy in for tea and lets it stay and run riot. This is just going on my own experience and noticing or hearing others patterns I’ve known, also living with it.

As I lie here with indigestion after barely chewing my food because I’m too fucking knackered (for those of you who read this post – yes, it keeps on happening lately), I find myself thinking about the shame around chronic fatigue and how there is so much of it. For me, anyway. This is easing now – for sure – and maybe this is why I can now see this and spot the patterns that lead to the isolation and the withdrawal when energy and/or feelings of health rapidly go on vacation. My theory is that this shame is the thing breeding the secrecy. Without shame, I don’t reckon we would be so secret. Sure, a lot of the time the secrecy is there because I’m too fucking knackered to be out there showing off my chronic fatigue, but I would be a lot less worried or hesitant, and riddled with social anxiety, if I didn’t hold such shame around it.

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For so freakin’ long – too long – I’ve felt so embarrassed about the fact I have chronic fatigue, or as we call it in the UK: M.E. If someone asks about it or initiates a conversation about it, I mutter and stutter my way through a few sentences. I generally always appear confident with what I’m saying but I can’t wish the conversation to change subject quick enough. Most of the time I just have to do this myself and start talking about something cool and fun – because who wants to talk about Chronic Fatigue anyways? This swift change of subject purely comes down to my lack of confidence in what people will be thinking and my shame around the fact that I have it. In these moments I become a professional mind reader – this quite often becomes my full time occupation – and I just KNOW that the person I’m talking to is thinking: “oh, she’s just making it up…she’s just lazy…she needs to get a grip…maybe if she just stopped thinking about it she’d be okay…I get tired and I don’t lie around all day…I bet she could just push on through…”

Yeah so, chances are most people aren’t actually thinking these things. And if they are then sod it.

I have spent so bloody long not quite believing that I have it. It’s taken approximately 5 years. Wow, yep – 5 whole years of not really fully believing that’s what’s going on. There are a thousand words I could type about why this is, but just in a nutshell – it has part to do with a lack of confidence and trust in myself but also a big part to do with the world that I submerged myself in shortly after discovering I had chronic fatigue. It’s the world of ‘Emotions Make You Ill’ – authors like Louise Hay…I took this as ‘I have made this happen, so therefore it’s my fault and it’s not really real, I’m making it up, I just need to think positively, this is hear because I’m negative’.

For starters, that is absolute bullshit. But also, I think this has definitely contributed to the shame and secrecy story I began telling you about. Now though, this belief and ability to connect with the fact I have chronic fatigue has come, and this definitely has to do with my therapist who GETS it and so has slowly enabled me to trust myself enough to say: “yes, I have chronic fatigue. Yes, it sucks. But yes, I deal with it this way and that way.” This, without a doubt, is how I now can ‘own’ my chronic fatigue.

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The shame and secrecy is still there but not as much. It only sneaks about when I’m not paying attention…when I drift into old patterns because I’m too exhausted to notice I want to change them. For me, shame shows up in the mind reading and the assumption that people don’t want to hang out with me because I’m tired or not such good company (in my opinion, not necessarily theirs) and the inner critical self chatter I give myself. The secrecy then spills from here, showing up with my bypassing any kind of conversation about what physical experience I am having that moment. I will just – second nature – fail to mention that I have spent half the day in bed, my entire body hurts, I feel like I’m going to throw up, when I speak on the phone with a friend. Instead we talk about everything else. Often it’s because I consciously don’t mention what’s going on for me physically but also I notice that so often I just don’t even think about it. I hang up the phone and realise there is/was a whole world of stuff I didn’t even mention…my friend would never know. The trouble is, when it is so fucking confusing and one day varies so bloody much, from the other, this just adds a good dose of shame and secrecy to the mix because it feel so impossible to articulate. So I don’t. Or I try to but I just am swimming in mind reading and inner critical chatter that I end up not doing myself justice at all.

It definitely has been an effort to break out of this secrecy shame spiral. Definitely. And so often it’s been so painful and shit and I’ve wondered how on earth I will ever have any friends left when I am so lame, so sleepy, so monotone. But the truth is, we never are what we think we are socially…I believe. Chronic fatigue or no chronic fatigue. The self critical chatter just screws us over and is always playing a false tune.

The shame around being so ill with something that can’t be ‘seen’ runs so deep for me, and I definitely think this is a big part of why I feel that urge to just stay secret. How the hell can I be so attached to my bed, so riddled in pain or crippling fatigue, and think it is okay when The shame that I am not out there being 26 like all my friends are. The shame that I am not ‘fulfilling my potential’ and embracing life. The truth is though, I am embracing the life and health that I have right here at my fingertips. And sometimes that health is seemingly so distant that all I can do is sleep or doze or at least be horizontal. The fact that I can’t do anything else in these moments should wipe away any shame on my emotions slate. It should, but it often doesn’t. The only time it does, is when I remind myself of reassurance I have received from friends about what they think – about how they don’t feel any of these things I feel towards myself. Then I remind myself of what I know and believe in my core, and I know that I am not making this up, that my physical experience is as valid as any other persons. So slowly I have begun to trust myself and let the shame not rule the show.

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Test the shame-free water. Share through the secrecy. Begin to carefully take the chronic fatigue outside – even if just through conversation – with those you trust and love and know will offer compassion and/or empathy and I think the shame naturally has nothing to hold onto. Shame breeds secrecy but secrecy breeds shame too. The only way, with any kind of shame, is to share it and take it out of the isolation. Ask for reassurance. Check it is okay to have a nap at a friends if that is what it takes to enable you to visit them for an afternoon or an hour.

This, for me, has been what has gradually made it safe to have chronic fatigue. Even though it fucking sucks, it is a hell of a lot easier having it and knowing that I can share it with friends too. I’m not saying I’ve perfected this art – I often feel pretty freakin’ far off – but I notice the difference between now and a year ago and it is huge.

So go share where and with whom you feel comfortable, and let that shame or secrecy begin to take a hike.

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4 thoughts on “The secrecy of Chronic Fatigue

  1. Pingback: The secrecy of Chronic Fatigue | quietgiraffe

  2. For years I avoided telling people what was wrong with me for fear of their reactions. When pushed I would say that I had a neurological disease or was ill following a virus, anything to avoid having to admit to having ME/CFS. It took a long time to realise I had nothing to be ashamed of and the only way to combat the stigma was to speak openly about my illness in order to educate people as you have done here.

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