Being Chronically Ill is Not Fun
“Oh, I’d love to not work every day.”
“Oh, you’ve had another rest day? That sounds amazing.”
“You have a pretty easy life, don’t you?”
These are all things that have been said to me at one time or another, when I’ve been discussing my chronic illnesses with others who simply do not understand what it’s like to be chronically ill and have no experience of chronic illness.
And every time these things are said to me, I feel awful.
There’s a huge misconception out there that if you’re chronically ill and unable to work, then all you do is sit around and watch TV, read books, chat with friends, and generally have a nice life. There’s the idea out there that the chronically ill are happy not to work and that none of them do work.
But this is so wrong and untrue, on so many levels.
A large proportion of society sees chronic illness as an excuse for not being a productive member of society, and the effects this has are detrimental and harmful.
Thanks to media reports on how some people are gaming the system by claiming to be chronically ill when they’re not, many genuinely-chronically-ill people are now tarred with this brush and made to feel like they are lesser.
We are told we are worth less than those who are able to work full-time, and we are made to feel like we are burdens.
We are told that we have “easy” and “fun” lives, as people believe we watch television all the time and do fun things.
But what a lot of people don’t understand is that when we’re not able to work, we’re also not able to do those recreational things:
- We’re in too much pain to move or walk about, or maybe we’re bed-bound
- We often can’t leave our houses to go shopping
- We can’t watch TV or read books as our vision is blurry and we’re constantly nauseous
- Our time is often taken up with medical appointments
- When we’re dizzy and fainting, we can’t do anything
- When we’re experiencing side effects of our medications, and still not getting much relief from our illnesses, we feel even worse
We are legitimately ill, yet often we’re made to feel like we’re “not really that bad”, that we’re “choosing” not to work, or that we’re “milking it”, because able-bodied, healthy people don’t understand how we could feel like that all the time. They think we must be exaggerating and just trying to have an “easy” life.
And those amazing days when we do feel better? When we push ourselves to do more than we should, just because we want to be “normal” for a day?
Those days are always used against us by society, and our “friends” whisper about us and how those days are obviously proof that we’re not really ill, that we’re choosing to live like this.
“If you did that yesterday, you could work a full-time job. You’re just choosing not to.”
“You need to try harder. We know you can manage a full day, but you’re too soft. You’re letting your illness win when you then revert back to having rest days.”
I’ve had both of those things said to me after I managed to do a full day out. What those people didn’t see was how unwell I was for the following three days (because they don’t see me on those days as I hide away), how dizzy and sick I was (because I don’t tell people), and how their comment was hurtful and very harmful. They also didn’t see that I’d had to rest two days prior to the day out, in order to ensure I’d be well enough.
Instead, they assume that I am choosing this lifestyle. That I am some sort of con-artist, pulling the wool over people’s eyes. They think that one good day is proof that I am not really as ill as I say I am — and really, I actually don’t tell most people just how unwell I truly am for fear of not being believed, especially when many of my illnesses are classed as “invisible”.
You can’t see my heart rate rising or my blood pressure dropping. You can’t see my ribs dislocating or my vision blurring and going double. You can’t see when I’ve got an excruciating headache and feel like I’m going to faint.
I know what I live through, and I shouldn’t need to justify it to others in order to be treated with decency and not made to feel like I’m a burden or a fraud, but that’s exactly how I feel. And I know, from talking to others, that I am not alone.
Being chronically ill is a full-time job.
This is a common phrase among the chronically ill, and it really is true. On average, I have two or three appointments a week. Many of these are at hospitals that are a two-hour car-journey from my house. Often, the hospitals are running late. If I have an 11am appointment, I have to leave my house at 9am to get there. I could be waiting in the waiting room for up to two hours. The appointment itself can take anywhere from fifteen minutes to an hour. And then I have the two-hour journey home again — and that’s if the doctor doesn’t send me to have blood tests or scans that day too, which, you guessed it, also entail a lot of waiting around. Before I know it, it’s 3pm and I’m still not home.
Days like those are exhausting, and they completely wipe me out. I’m unable to do much when I get home because the fatigue is so bad and I’m so dizzy and nauseated. Just getting some food for dinner can be impossible at times.
And I also have to rest for the following days after. Usually, by the time I’m rested and feeling more like myself, it’s time for the next appointment.
But this doesn’t take into account all the research I have to do into my chronic illnesses. When you have a rare condition, it’s not uncommon to need to be your own advocate.
This research is exhausting. It’s frustrating. It leaves me feeling like the dog in the photo below: tired, despondent, and like I’m not actually getting anywhere.
Being chronically ill can really affect a person’s mental health.
I often feel like I’m a failure, that I’m being judged, and I constantly feel the need to prove my worth. This means that I often don’t get any time to do the things I want to. I can’t go out to the cinema. I can’t have must ‘down-time’, because all the time that I’m well enough to be doing things is taken up with necessary stuff, such as making dinner, going to appointments, and doing research into my condition.
My inability to work a full-time job really affects my self-esteem. This isn’t a surprising in a society that seems to value work above all else.
I am chronically ill, and I work part-time. I am a writer. I’d love to write full-time, but I cannot. My health does not allow it.
Yet because I work, a lot of people immediately assume that my illness can’t really be that bad. They assume that I’m exaggerating my symptoms and again, I feel like I’m not believed. My illnesses aren’t taken seriously, because my part-time work is apparently proof of my good health.
Yet, because I work, I also find myself comparing myself to healthy, able-bodied people and therefore feeling disheartened and bad about my lack of productivity.
Every time I have to take a day off to rest, I feel guilty — even though it is what my doctors have ordered me to do. Society makes me feel like I shouldn’t be doing this, like I should just be “stronger.”
I’ve had countless therapy sessions about pacing and chronic illness management, as I am determined to work in a way that I can. I believe a lot of this is due to the worth that society places on jobs, and the idea that those who aren’t able to work for health reasons are ‘scroungers’ and worth less.
Because of this, often my desire to work comes at the expense of my health. I’ve been hospitalised many times for overdoing things, for pushing myself harder and harder. When my debut novel released, I celebrated its release day by being admitted to hospital. The same thing happened when I was writing my second book and when it released. And those weren’t the only instances of that. And I know it’s going to happen again.
When people learn that I am chronically ill and only work part-time because of this, they think I must have a nice, easy life. They think maybe I don’t want to work as much as others and that I am choosing this lifestyle. But, please believe me when I tell you I’d do anything to be healthy.
I’d love to work full-time. When I was younger, I dreamed of working in animal conservation. This is something I can’t do because of my illness.
I am now a writer, and I get so frustrated at how long it takes me to write a manuscript sometimes — when I spend weeks in hospital, I get no work done. I fall behind with my deadlines, and this greatly affects my self-esteem and feelings of self-worth. And I have a burning desire to write, and sometimes I just can’t. I am too unwell.
I would love to not be chronically ill, but I am and I can’t change that. There are currently no cures for my conditions, and all I can do is manage them the best I can. So please don’t make me feel like I am a lesser member of society because of it and that I am using my illness to my own benefit.
Madeline Dyer is a young adult novelist. She also writes personal essays on topics such as mental health, disability, and neuropsychiatry. You can follow her on Twitter and Instagram @MadelineDyerUK and visit her website www.MadelineDyer.co.uk. If you’d like to keep up to date with her writing, you can follow her on Facebook for both her novels and her personal essays.