Living with a chronic illness is not ‘fun’

The title of this blog post may seem pretty obvious. You may have read it and thought ‘of course living with a chronic illness isn’t fun’, but its not the obvious I am going to talk about today.

I often hear things like ‘at least you get to have a lot of sleep’ or ‘you get to spend a lot of time in bed’, as if these are things to be grateful for, or as if they are perks of my illness. And I know I am not alone in that.

Comments like that arent meant to be offensive or insensitive. Often they are from people trying to support you, and look on the bright side. It can be hard to find the positives when you live with an illness like CFS/ME, so you do have to be grateful for the things you can.

However, I often feel like these comments glamorise a lifestyle that I didn’t chose and don’t actually enjoy living. Honestly I even say them myself sometimes to try and persuade myself that my life isn’t that bad.

In an effort to explain more about what it’s like living with a chronic illness, here are a few things you may hear/say about chronic illness that just aren’t true, and can be unhelpful.

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What living with a chronic illness isn’t

Fun

As I said, this one may be obvious. In fact they all might be. But I do feel like people who haven’t experienced a chronic illness have a very different view of my life than I do.

What you may see is someone who gets to go to bed early and sleep 12 hours a night, or spend a lot of time in bed watching TV, because I have an excuse.

Don’t get me wrong I love my bed, but I don’t want to. I don’t want to spend all my time there, I don’t want to need to nap in the afternoons or to have to sit watching TV because I havent got the energy to do anything else.

I feel like I’m wasting my time, like I’m wasting my life. There’s so much more I could give to this world than my ability to sleep and then still feel exhausted.

While you may appreciate extra time in bed, or a cheeky nap in the afternoon, to people like me it’s just a reminder of how our bodies have failed us.

Lazy

This is definitely one of my least favourite words in the entire world, and it has been used not just for those living with chronic illness, but also mental illness.

We’re often seen as lazy, like we don’t do enough to help ourselves. We are given unsolicited health advice from people who may mean well but don’t stop to think that we may have tried everything. If I could do something to alleviate my symptoms and get my life back to ‘normal’, I absolutely would!

I’ve often asked things on twitter, directly aimed at the chronic illness (or spoonie) community, and had unhelpful replies from abled bodied people.

Again they do mean well, I have no doubt about that, but they haven’t stopped to think about things from our point of view, to think that the things that help them when they’re tired or struggling may not be very useful to us.

And we are certainly not lazy.

An excuse

Kind of leading on from there, another one I’ve heard is ‘at least you have an excuse not to do the housework’. NO!

I can completely understand to an abled person that this is a good thing, very few people like doing things like housework and chores. I mean, I absolutely hate housework. But I WANT to be able to do it.

My house is a mess, and I can’t physically keep it clean. It’s embarrassing. I do something simple like washing up or hanging up the washing and my body hurts afterwards. It makes me feel like less of a human being, because these are simple things that people do every single day, and I just can’t do them.

My partner works full time and has to come home and look after me, making my meals and doing the shopping for me. I try my best to contribute, and I push myself to try and make things even, but it’s hard knowing that things will never be fair.

A lot of people living with chronic illnesses need full time carers, whether that be a family member or a professional, and would love to be able to care for themselves without outside help. Don’t get me wrong these people are amazing, and I don’t want to take away from that.

But wouldn’t you rather do these things yourself instead of having to rely on other people all the time?

Made up

I read a quote recently that I just love: ‘Just because I carry it well, doesn’t mean its not heavy’.

Like a lot of chronic illnesses, CFS/ME is an invisible illness. You can’t see it, and a lot of the time people just wouldn’t know it’s there. In fact none of my work colleagues were aware for the first 6-9 months of me working there because I didn’t feel the need to tell them. They all had no idea.

Why would they? I don’t actually look sick.

Invisible illnesses are really hard to navigate, because even the closest people to you just can’t tell how bad your symptoms are or what level of pain you’re experiencing. You get used to living with pain, so even severe symptoms don’t appear to affect you very much.

There are also a lot of people who don’t actually believe you’re in pain at all. I’ve heard horror stories of people who have been dismissed by DOCTORS (yes, actual medical health professionals) when in fact they were suffering with a chronic illness that just wasn’t diagnosed.

We are not making up our pain, it is DEFINITELY not all in our head, and we are most likely in more pain right now than we look.

This is not meant to call anyone out. This is not meant to make you feel like you’re not doing enough to support your close friends and family living with chronic illnesses. It is just meant to be food for thought.

I know my friends and family all want to do what they can to support and help me, and even some of them have said these things. It doesn’t mean they love me any less – and that goes the same for you!