This is especially for you if you suffer from severe endometriosis (and those of you don’t but want to understand more). I wanted to write this because for so long I struggled to know how to express what I was going through. It took me a long time to realise this is a different kind of tiredness, not just me being pathetic. And it’s not a symptom that health professionals pay much attention to, yet it can be the most debilitating. So I hope that perhaps this puts into words something of what you feel too.
“Yeah, I’m really tired too,” I hear people say when I mention how exhausted I feel. And I want to say, “But this is different. This is not just normal tiredness – it’s far worse!” You know when you go to bed late several days in a row, you get up early to go to work, and your days at work are super busy, and you come home ready to flop on the couch because you’re so so tired? It’s not like that. That kind of tiredness I can cope with. That kind of tiredness I can battle through. That kind of tiredness takes a bit of chocolate or coffee in the afternoon, maybe some good background music through the headphones and I can make myself keep working. And you know that soon you’ll be able to get a couple of nights of 8 hours sleep and you’ll be fine again.
Overwhelming, oppressive exhaustion is the best way I can find to describe the tiredness that comes with endometriosis. It’s not just fatigue. It’s not that tiredness that comes from a satisfying day of hard work. It’s not even the tiredness that comes from physical exertion. It’s not like anything I’ve experienced before. It’s all-encompassing. I’m continuously battling to keep my eyes open because I’m so so sleepy. My whole body is fatigued. At its worst, walking 10 minutes down the road requires real concentration to keep putting one foot in front of the other. Every single thing I do takes an enormous amount of energy. It feels a bit like I’m forcing myself to climb a steep hill when I’ve not had anything to eat or drink for three days.
But I think the hardest thing about it is knowing nothing will make any difference to it. Getting 8, 9, even 10 hours sleep doesn’t help except that I’m blissfully unaware of the exhaustion when I’m asleep. I wake up feeling no less exhausted than when I went to bed. It takes incredible mental strength to persuade myself to get up, to haul myself into the shower and then after my shower I just need to sit for a bit; I’m worn out already.
It feels like your whole brain is awash in a thick fog. If I make an effort, I can think clearly and be productive, but only for a short time, then the fog rolls in again. I find myself staring at nothing, wondering how long I’ve been vacant. I find myself working on a task but then become aware I have no idea what that task is. Every minute of the day my brain is telling me, “Just lay down your head and go to sleep. Sleeeep.”
Yes, to some extent you can push through it. I could just about make it through a work day by sheer perseverance (though not particularly efficiently), but that would have sapped up all my energy for the day so I couldn’t do anything in the evening. And in a social setting, I would appear fine as I put in a lot of effort to concentrate, to ignore the exhaustion, to focus on the other person, to remember that soon I’d be able to go home and sleep. But pushing through for too long doesn’t help because all you’re doing is pushing some of the exhaustion and fog to the next day so you’re able to do even less tomorrow (or the next day or the next). At some point it all comes crashing down on you and you’re essentially house-bound for two days because you pushed too hard for a week.
I honestly found that this exhaustion was worse than the endo pain. If the exhaustion was taken away and the pain was still there, I could have coped a lot better.
So to my fellow endo sufferers, I want to say: it’s real. The exhaustion is a real symptom, it’s not in your head and there’s a reason you feel shattered all the time. Be kind to yourself, recognise your limitations and as much as you can, plan out your days so you’re not always borrowing energy from the next day.
To health professionals, I want to say: please take us seriously when we say we’re tired all the time. I know it’s a vague symptom so ask us more about what we mean and how it’s affecting our lives. It’s hard for us to put it into words. And please realise this can be more debilitating than the pain so take it into consideration when you make treatment decisions.
And to the researchers, I want to say: maybe consider investigating this exhaustion. Help us understand more about why it happens and if there’s anything that can alleviate it.
For me, 2014 was a year of this constant oppressive exhaustion pretty much every day and I can only credit God’s grace for getting me through that year as I definitely did not have the strength by myself. Thankfully, after further treatment, it’s not as bad now, but a background level of chronic fatigue that still impacts my everyday life is a constant thing for me.