I wrote a blog post about a year ago about one of the most frustrating and disabling things about having a chronic illness (type 1 diabetes in my case), that being the utterly draining exhaustion that can consume you, a medical fatigue that’s not responsive to rest or sleep, and goes far, far beyond being simply “a bit worn out.”
As it happened, at the time of that post I was much, much sicker than I realised. I was living on the edge of a coma, and had to take indefinite sick leave to fix myself. There was a lot of lonliness, a lot of frustration, and yes, lots of tears. I don’t remember much hope, but I was stubborn. I did get myself better and eased my way back into the PhD, and life, a few months later. My life story sometimes feels like it’s divided into before and after I had to take that time off.
Because illness does that; it divides. When I was sick vs when I was (relatively) better, when my blood sugar levels are too high vs when they are too low, my friends who get it vs my friends who don’t.
I met up with two of my closest friends (who get it) last night. Last October, the three of us met up in our of our houses. After a two hour drive there (and I wasn’t even driving), I was so exhausted I had to sit down when we were waiting for a table in a restaurant. We were waiting about three minutes and I couldn’t stand. I was twenty four at the time, and looked, as I always have, completely healthy. We had a good lunch and a great afternoon, but the same fatigue crept up on me again a few hours later. My friend instantly realised what was happening and without fussing or patronising, without any embarrassment on any side, gave me his bed. It was probably one of the nicest and most supportive things anyone’s ever done for me. He understood, he didn’t blame me, just helped – and after a lifetime of refusing to show weakness or let illness stop me and thinking I was on my own, I realised that I wasn’t. On New Year’s Eve, we were at a concert, and the same friends joined hands around me to make sure I could do a quick, subcutaneous injection into my stomach without getting accidentally pushed or jostled by anyone in the crowd. Friends like that are the ones you love.
I took the sick leave I didn’t want to take (because it felt like giving up). I worked very, very hard to get better, and I did. If I can get through the next three weeks, I’ll have had a full year free of intensive care wards. I’m not in danger anymore. But a chronic illness is a chronic issue. Yes, it’s better controlled now. But it hasn’t, and never will, go away.
My day to day existence isn’t the same struggle it once was. But I’m in the final stages of a PhD, which is in itself extremely demanding, all the more so as I’m trying to finish up earlier than originally planned. I’m managing to control the illness, but long hours, lack of sleep and less than ideal eating habits aren’t good for it. I’ve cut a lot of activities out of my life to give myself the time to get my experiments finished and my thesis written, but I’ve cut a lot of social events out of my life for another reason: exhaustion. When I resumed my PhD, I was much more careful than I had been before I went off sick. I put a strict limit on how late I stayed in the lab and how many hours I worked at home afterwards. I kept a very strict eye on what and how much I was eating, and made time for regular exercise. But I have a deadline to meet. It’s no longer practical to spend so much energy on improving my health. And this is fine, because it’s only for a few months. I’m not getting healthier but I’m not getting sicker. I’m up and down, but there are ups as well as downs. Sometimes I wonder if it’s even possible to unravel the effects of the dreaded end-stage PhD from the effects of chronic illness, but whichever of the two is most responsible is irrelevant. I can’t rely on my energy levels. I can be fine one minute, come crashing down like the proverbial tonne of bricks the next. I know the level of tiredness I feel these days is not normal; the problem is that not many other people understand that.
The friends I met up with last night didn’t bat an eyelid when I was late due to an attack of hypoglycaemia which led to me being temporarily unable to walk or speak properly, and meant I had to hide in a classroom until I’d brought myself back from it, in case anyone thought my shaking hands and slurred speech were an attack of the DTs. They’ve told me to sleep when I need it, and to stay in when I need it. And because of this, I know I can always go out with them, even if my health and energy are a bit on the unreliable side, whereas with other friends and acquaintances, I often stay in. I know no one will feel a great day has been ruined if part of it ends up spent sitting on a park bench feeding me lucozade (again), or that they’d have had a better night with someone else if I don’t manage to stay out til closing time (again). If I suddenly run out of energy, or get low glucose levels, they can handle it, and will handle it, without trying to make me feel bad (“Why are you leaving so early? We boring you?” “Couldn’t you have prevented this stupid diabetic attack?”) I should point out that there have been and will be very few times in life when this is an issue – I mostly live a full and interesting life, and very rarely need allowances made. But sometimes I will. And friends like these mean I can go out and enjoy myself anyway, and that I won’t be made to feel guilty if I’m not up to doing or going to something.
I was talking to another friend a few days previously. He’s a good person, and a good friend – it’s just that he’s never been sick, and to him, tired is just tired, something that can be staved off with a good coffee and battled through. He’s never been so tired it stopped him. He asked me if I was planning to go to a performance night in a few week’s time, and I answered, honestly, that I very much hoped to, but with life as it is, couldn’t be sure yet if I’d make it. He started off. Well, I really should go. A lot of my friends would be there, and no one had seen me in ages. And maybe I owed (the organiser) a favour. I should support the acts. All these things are reasons I do want to go, and will feel guilty if I don’t. But as we were talking, I was standing at a bus stop, and I was concentrating. I had to concentrate to keep myself standing. But there’s no way I could have said “I might just be too tired to manage” without him hearing “I think I’m too cool to go to that, I don’t care about all of my friends who’ll be there and I think the acts will be awful – I have such disdain for the event I couldn’t even be bothered making up a decent excuse not to go.”
Life is busy and demanding. We all get tired. But sometimes, it might be deeper than that. Exhaustion is a symptom of depression, as well as a plethora of other illnesses both mental and physical, many of which, like mine, are completely invisible. Sleep deprivation happens when people are dealing with difficult situations in their lives. So if anyone tells you they’re tired, listen. Don’t go for the autoreply. “Take a day off.” “Maybe you should go to bed early.” Chronic illness is isolating, and one of the most frustrating things about it is how exhausted it can make you. One of the most frustrating and depressing things about that exhaustion is not being able to talk about it, because no one can really understand how crippling it is. So if you’re friend tells you they’re tired all the time, chances are they’re probably trying to find a way to open up about something else. Because let’s face it, most adults are more than capable of working out “maybe I should try going to bed early” for themselves.