Yes, I used a Backstreet Boys song as the title. As if I could resist.
Chronic fatigue is often described as being a very ‘isolating’ illness.
I think a lot of people can see from the outside why it’s a lonely space to be in. The nature of the illness makes it difficult for you to get out and see people – to work, to have hobbies, a social life; all the various parts that make up our lives and which are rewarding most of all simply because they bring us together with other people. Chronic fatigue takes most – or all – of those things away from you, at least for a time.
But I think when people look in from the outside it’s impossible to realise what it is that really makes chronic fatigue a lonely place to be in.
The best comparison I have is that every day is spent feeling like you’re severely jet lagged and sleep deprived. Because of how exhausted your body is, you don’t actually have the energy or capability to connect with life in the way you would normally. Even when you’re with people, and they probably won’t see this unless they know you very well, you’re not really there.
It’s so hard to describe, especially on a lack of sleep (oops), but this aspect of the illness may have been what I struggled with the most. Even when I was with people, or doing things I enjoyed, it felt so incredibly watered down compared to how it was before. I realised the extent to which you need your energy in order to really connect with people. It’s an awful feeling; being with people you love and so desperately wanting to connect with them in the way you could before, but being unable to due to the state your body is in. And I wasn’t too out of it to not be fully aware of this.
When I look back on the difficult periods in my life one of the patterns I see is that I often don’t fully process or acknowledge how painful the experience was until it’s passed. Maybe I wasn’t courageous enough at the time to face it, or maybe it’s just the natural way we process our experiences.
And so it is also with the last two years. I’m deeply grateful and relieved that I know I’m over the worst of it now. My health is much better, I’ve done the hard graft to get to the stage where doing the right things for recovery comes relatively easily, and I’m able to fill my life with many more of the rewarding things I cherish. Most of all, I’m able to fill more of my time with being around others. I don’t feel so emotionally drained anymore by the experience like I remember feeling. And maybe all of this means that I’m now able to face up to what it’s been like and how it’s felt, because recently I keep having these moments that catch me off guard, and where I’m overwhelmed by the memory of how all alone I felt for the first eighteen months of the illness. Maybe it’s partly brought on by re-realising how beautiful it feels to connect with people, and how magical it is when they open themselves up to you and show you their genuine selves. Maybe it’s the right people or situations arriving in my life to trigger all of this off.
I still felt and do keenly feel the distance to others at times, because I can’t relate to the things going on in their lives in the way I’d like to. My life is starting to resemble a ‘healthy’ life, but sometimes it feels like a chasm when I listen to my friends and loved ones telling me what’s been happening. For them, the last two years have been taken up with all sorts; traveling, falling in love, getting engaged, breaking up, finding new jobs, getting fired, discovering new hobbies, miserably failing at new year’s resolutions, graduating, even bringing new little people into the world and so much more. Experiencing beauty, joy, surprise, pain, loss and all else that makes up life’s rich tapestry.
A couple of months ago I got caught speeding and naturally cursed myself for being such an idiot. But that wasn’t my first reaction. My first reaction was delight that something had actually happened in my life that I could tell people about – exactly the kind of thing which happens to people living ‘normal’ lives. Something which they could relate to and we could laugh about. It only struck me later how sad this was.
One of the things I’m most grateful for with this illness is that as I get healthy again I can connect with people more deeply than I ever used to in the past. There are all manner of reasons for that; like how it’s given me a greater appreciation for how it truly is the other people in our lives that make life rich, and that the more authentically we open ourselves up to them, the more rewarding that connection can be. I’ve also had to do a lot of psychological work whilst I’ve been ill to try to work through any habits or patterns which may get in the way of my recovery, and I think during that process I’ve become a more simple and honest version of myself. I’ve found it easier to form strong relationships with people from that space. And all that meditation binging has no doubt helped me be more present when I’m with people.
But all of this has gotten me thinking about how I could have replaced ‘chronic fatigue’ with a number of other things in this blog. There are so many things which block us from feeling that strong sense of connection with others, and most of them are unnecessary. Sometimes it’s illness. Sometimes it’s our own fears, often well-justified by past experiences where we’ve been vulnerable and it’s caused us pain. We all fear that pain, but it’s impossible to live our lives most fully and deeply engage with others unless we accept that pain is an inevitable part of that journey. The last two years have held more than their fair share of pain for me, but I seem to be finding some sort of acceptance towards that; acceptance that pain is part of what makes life beautiful. And if we want to open ourselves up to all life has to offer, then we have to be courageous in that most understated way, and welcome the hurt as well as the joy. One can’t exist without the other.