5 Ways Being Chronically Ill Is Worse Than You Think

In 2013, I was really well. I had a large group of friends, had recently started dating a man who would eventually become my husband, and was fitter and thinner than I’d been in a little while. If you’d asked me then, I would’ve said I was the happiest I’d ever been and I genuinely thought my life was, for the first time, perfect.

However, by December of that same year, I started getting tired all the time and whenever I did anything, I’d start vomiting.

By early 2014, it was discovered that I’d contracted glandular fever, which is not a fun experience. And then I got meningitis. And then I got encephalitis. I was literally bed-ridden for months and could not face even the most basic of tasks. Even though I’ve technically ‘recovered’ from these illnesses, I developed chronic problems as a result. I’m now recovering from chronic fatigue, fibromyalgia, IBS, my liver doesn’t work properly; and nor does my thyroid or adrenal glands.

These are some side effects that you might think are pretty damn obvious – but there was a whole host of “side-effects” that I didn’t expect that are, sadly, quite common among the invisible illness community.

 

#5) Your House Will Get Messy. Really Messy.

If you don’t have anyone to help you, your house will get really messy really quickly.

Why?

Because when I was at my very worst, going to the toilet to pee was torture {if I’m honest, I have actually wet the bed before because I literally, physically could not make it to the toilet and back again). My throat was literally ripped apart from vomiting so frequently, and I was barely able to do more than sleep. When you’re that sick, it’s really hard to care if mould is growing in your shower, or your floors haven’t been vacuumed for a month. Sure, I could pay someone, but where would I go? My family was nine hours away and I didn’t want to tell my boyfriend, who was bringing me food and cooking me dinners so I’d eat, that he had to clean my house, too.

Also, when you’re struggling to bathe yourself (I could only shower if someone was helping me – at my worst I couldn’t be trusted to stand long enough without passing out) you kind of don’t give a shit when your house is messy.

 

#4) Even If You Aren’t Really Eating, You Can Still Gain Weight

While when I first got sick, I lost a lot of weight very quickly – I went from about 60 kilos to 50 in about two weeks – but I also gained a lot of weight very quickly when I was able to eat again. I say this loosely because while I was technically able to eat again, I vomited at least once a day almost every day for a year, and my body hated pretty much everything. (Several years on, and I still have a daily battle with trying to eat. If I don’t eat, I fall sick; if I do eat, often everything comes back up.)

Apparently, and this is something that is common in those that have suffered some form of chronic illness, that my thyroid and adrenal glands were working so hard to keep me alive, that they didn’t know how to work properly anymore. Put simply, it means that my metabolism doesn’t work anymore and I’m allergic to almost everything now (yay). However, because those types of glands determine your weight, it doesn’t matter that I eat an incredibly healthy diet and exercise where and when I can, my body doesn’t know what to do anymore, let alone how to cope.

 

#3) You Will Get Better …. And Then You’ll Get Worse.

This one is a bit more obvious. I cannot express how many times I actually felt like I was recovering. I’d get really excited about how I hadn’t woken up in pain, or tired, or hadn’t vomited that day. I’d want to go out and do something, anything, or I’d start working out ….

And then I’d crash. Badly. I’d go back to not being able to walk to the toilet without risking vomiting.

 

#2) People Don’t Believe What They Can’t See

Even though I vomited at work more times than I could count (and more than once in the middle of my classes while I was teaching), and my doctor straight up gave me a sick certificate for three months, a lot of people didn’t believe I was really that sick. I mean, how could I get all three illnesses? To be honest, even my doctor was shocked – the only explanation she could offer me was that I’d gotten glandular fever, which weakened my immune system, and then soon after (before I’d been diagnosed with any sort of illness) I had my wisdom teeth out. My wisdom teeth were pretty impacted, and I needed surgery to have them removed. Because the surgery was pretty intense, I clocked up my fatigue and vomiting to the surgery and because I’m a teacher, just general exhaustion from completing a school year. However, my doctor believed that I must have picked up meningitis from the hospital at some point because my immune system was shit from contracting glandular fever.

And encephalitis is something that people who have had meningitis sometimes contract, so there’s that.

However, most people didn’t offer a lot of sympathy, and seriously believed I was exaggerating for ‘attention’. A lot of people questioned why I’d come back to work if I was still vomiting – but if you’d just taken three months sick leave, and you aren’t related to the Hiltons, where do you think your income is coming from?

But basically, what I learnt was if it’s not a physical illness that people can see, they will either think you’re a) lying, b) exaggerating or c) that you’re somehow deliberately defying their expectations of when they expect you to get better.

Worse than that? Some people will actually think you’re suffering from Munchhausen’s, because apparently it’s easier for some people to believe you must be ingesting poison than for you to actually be, you know, ill.

 

#1) You Will Lose Friends

This was the hardest one for me to accept. To be honest, I thought I was alone in this problem for ages and that something was wrong with me – or that I’d done something – when this first started happening. However, I recently learnt from a friend who has leukemia that no, it’s pretty damn common – your friendship circle will shrink because people are shit and just don’t want to accept that sometimes, you fall sick, and sometimes, you can’t get better.

I can’t really tell you why that’s the case (other than the fact that people are shit) – a lot of the people I lost I was damn close to. I’d spent thousands of dollars to attend one girl’s wedding, let her stay over my house when her fiancé was away because she’d never been alone before, gave her my car for a week when she didn’t have one (I went with my roommate to work), and genuinely thought we were pretty damn close. My point isn’t ‘Oh, she owes me because I did a, b and c for her’ – my point is, I don’t lend my car to acquaintances or spend thousands of dollars to attend a wedding for someone I don’t give a shit about.

However, when I got sick and didn’t immediately get better, things started changing. First it was one girl, then it was another, and so on and so forth. I became a leper – I was a ‘drama-queen’ that ‘sought too much attention’ and being sick was a problem they weren’t willing to deal with. (They also believed that I was suffering from Munchhausen’s, which is horrifying in and of itself, but worse still – they wanted to make sure everyone else believed it, too.)

And I know what you might be thinking – maybe I complained too much. Maybe I asked them to do too many favours.

Except, remember I mentioned the messy house at the beginning? I didn’t ask anyone, outside of my boyfriend, for any help, ever. I tried to remain positive about everything that was happening – mainly because I literally believed I’d bounce back in a week or two (despite my doctor’s repeated assurances that wasn’t going to happen). And while I did complain at times, I think when you’re that sick, you’re allowed to air your grievances from time to time. Also, what the fuck else are you meant to say when you’re sick, vomiting everywhere, and some dumbass asks, “So how are you feeling today?”

I guess it’s as simple as everyone always says … when times are tough, you will find out who your real friends are. When the dust settles and everything is over you’ll learn that those standing beside you might not be who you first expected; and those that left you might be the ones you thought would be there forever.

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