We’re all familiar with battle imagery around illness, right? We refer to ‘chronic illness warriors’ and people ‘battling cancer’ and ‘fighting through their mental illness’. It’s often seen as a positive thing – as if illness is something to overcome, and something to be in contention with, and something to force out of our lives in any way possible. Most recently, even Boris Johnson was hailed as a ‘fighter’ and a ‘warrior’ when he was in hospital with coronavirus.
Sounds great, right? Sounds like what every person struggling with long-term health issues of any kind should be doing, because we have to fight to be ourselves despite everything we’re going through. We don’t want to lose anything or give up anything just because we are sick. Being a warrior is a good, positive, uplifting thing, right?
Well. I, for one, hate it.
I hate describing myself as a ‘warrior’. I hate the thought that I am in constant battle with my illness, and that I have to do everything in my power to overcome it, and that I am relying on my own strength and ability and strategy to defeat this thing that I am saddled with. I hate the thought of being in a never-ending war.
There are several reasons for my feelings on this matter, which I’m going to do my best to outline here, but I just want to quickly note that if you personally do identify with battle terminology and imagery around your illness, then I am not trying to make something positive into a negative for you. I do understand that this sort of language does help some people. I just want to point out that it can also be harmful when it is used in certain ways, and why, for me, it simply doesn’t work.
I’m also going to make a follow-up post to this one where I talk about what language I do like to use around my illness, and what makes me feel good, as opposed to this battle imagery. I think it’s very important to explore the kind of language we use around illness and long-term difficulties because it can really colour people’s perceptions, both the people struggling themselves, but also the view of others around them.
So, with that disclaimer out of the way: here’s why I don’t like to call myself a warrior.
If this is a battle, why aren’t I winning?
I can distinctly remember the first time I saw someone call themselves a ‘chronic illness warrior’. I was sitting in bed, where I’d been for about six months of constant illness, feeling horrendous and exhausted and downtrodden in that way you do after months and months of relentless sickness and discomfort. I was rapidly losing hope of ever feeling better.
I’d tried everything I could think of to improve my symptoms – eating well (well, as well as I could with constant nausea), getting out of bed even if I felt awful, sitting downstairs and marathoning tv shows so I wasn’t just in the same room all day every day, going outside when I could manage it – and nothing was working. In fact, I just seemed to be getting sicker. I was exhausted and run-down and I just wanted something to help.
Then, I saw a chronic illness warrior online. Don’t let your illness defeat you!, they proclaimed. You are strong enough to do anything! Be a warrior and fight your way through! Never give up!
I read it, and my heart sank even lower.
I have no doubt that the intentions behind these words were good. The author probably thought they were being inspiring, and teaching people not to give up on what they wanted to do, and to find strength to get through a difficult situation. But that isn’t how it felt to me. To me, in my defeated, exhausted body in the middle of a horrendous downward spiral that I would never recover from, it was one of the worst things I could have read.
But I’m not winning, was my first thought. There’s no way I can win. It’s impossible.
Before anyone calls me out for being defeatist, consider this: I had been doing absolutely everything in my power to stop myself from declining further. I was being good to myself and drinking lots of water and doing what little exercise I could manage and fighting my symptoms with all my strength. Every day, I battled my pain and exhaustion and dizziness and nausea to continue living something of the lifestyle I’d had before. And it wasn’t working.
I was losing.
I knew, intrinsically, that if I am indeed in a fight with my illness, then my illness will absolutely win. There is no way I can overcome it. No matter how hard I fight or how much I try or whatever I throw at it, I will not make it go away. It’s with me for life; that’s the nature of a chronic condition. I’m going to be living with these symptoms forever and I am never going to be able to make them go away through my own actions. If this is a battle, I lose.
It made me feel awful. I felt like a failure, like I wasn’t good enough, like it was all my fault that I couldn’t defeat this huge, awful thing that was crowding over my life. I imagined myself as a tiny stick figure in the corner of a page, with a giant, looming monster-shadow hovering over me, seeping into every aspect of my life and taking away everything I once held dear. And there was absolutely nothing I could do to stop it. Forget David and Goliath; I was looking at an amoeba vs Thor.
There is just no way on earth that I can win.
Does that make it my fault? Am I a failure? I know I’m certainly not the only one to have thoughts like this – whenever I see that someone has passed away and it’s described as ‘they lost their battle with cancer’, or whatever it might be, it makes me angry. As if it’s the person’s fault that they couldn’t get better. As if they didn’t do something right, which is why cancer ‘won’. As if they weren’t strong enough to survive.
No. Sick people are some of the strongest people in the world. We have to be. And I can’t even imagine how much more intense that strength has to be if you are facing a terminal situation.
If I’m perfectly honest (and this might sound a bit harsh), I utterly despise warrior language around illness. The onus is not on the patient to defeat their illness. It is not on the patient to be stronger than their sickness. It shouldn’t be the patient’s fault if they spiral downwards, or become sicker, or find themselves unable to improve. That doesn’t say anything about the person’s strength; in fact, I consider the people that are constantly relapsing and becoming sicker and sicker to be some of the strongest people in the world. No matter how sick you get.
Who wants to be in a battle they can never win? That’s the opposite of inspirational to me. It’s demoralising and exhausting and perpetuates a cycle of guilt and self-blame. You are not weak if you are losing your battle. You are not giving in if you live within your limits. It is not a bad thing to accept your illness.
How do I even go about fighting this battle?
In war, there is strategy. I’m sure most of us don’t have much real life experience with the front line of battles (if you’re a veteran, I sincerely apologise) but we may well at least be familiar with strategy games, or understanding how wars are fought. There is a hierarchy. There are many people on one side who work together to defeat the enemy. There is a morale that draws people together, and a feeling that you are not alone in your fight. Often, there is someone else telling you what to do. You follow your orders and you stick to the strategy and then you have a good chance of winning.
Not so when it comes to illness.
I think my thoughts on this are summed up perfectly in the song ‘Going Going Gone’ by Maddie Poppe. Before the chorus, she sings these lyrics:
‘And I’m the only soldier in this lonely war,
And I don’t wanna fight myself no more.’
When we live with chronic illness, we are alone. It is incredibly isolating to feel so unendingly sick without any respite, and unless there are other patients around us it is very difficult for others to understand exactly what it feels like. Similarly, with mental health problems, there is a stigma and a lack of understanding in wider society that leaves mentally ill people horribly alone with little to no support. If we really are fighting these issues, then we’re the only ones on our side. We have to go into battle alone.
Secondly, our health issues are a part of us. Personally, I find it near-impossible to separate the parts of me that are affected by illness and the parts of me that are me, because, in all honesty, they are one and the same. My illness affects every possible avenue of my life – my work, my rest, my alone time, my hobbies, my relationships, my position in the world – and as such, every aspect of my personality is changed by my illness. Having to constantly plan ahead and change my activities to best manage my symptoms has a massive effect on how I see myself and how I see my role, both in my professional life (as much as I can have one) and in my personal life.
My illness is me. I am my illness. It defines me and I live by its rules, because I have to in order to survive. It doesn’t make me miserable all the time. It doesn’t mean I’m giving up. It means I’m accepting my new lot in life, and actively choosing not to engage in battle with myself, because that has only ever resulted in tearing myself apart.
I don’t want to fight myself. I don’t want to have to battle through my days. I don’t want to be in constant opposition with such an intrinsic part of my life. I would much, much rather accept my illness, figure out its limitations, and live within them, than I would be constantly fighting for the slim chance that there might be some small improvement. In addition, whenever I have fought myself and tried to improve my symptoms, I always end up crashing harder and spiralling downwards, sometimes resulting in permanent relapse.
It is much better for my health, both physically and mentally, to accept my illness. To say, ‘Yes, I am disabled. No, I can’t walk very far, and if I try I will make myself worse. I need help.’ It is only when I accept my limits and live within them that I begin to make improvements, because I am finally allowing my body what it needs – to rest and recover instead of pushing it to do more than it is capable of.
Is it frustrating to have to live like this? Absolutely, and especially in the beginning. There is an adjustment period that follows any worsening of health or ability, in which I always try to see if I can work my way out of the spiral or if I need to accept it as my new normal. If it becomes a new normal, then I have to adjust all of my plans and strategies for coping with my symptoms because suddenly what I was doing before is too much. It’s horrible when this happens. I hate seeing more and more parts of my life slip out of my grasp.
And yet, I don’t fight it. I don’t force myself to try and do more, because that is setting myself up for failure by ignoring reality. I am not well. I have limits. Everyone has limits, in fact, even those mythical people who have seemingly nothing holding them back – we all need to eat and sleep and rest at some point. I just happen to know what my limits are in more detail than the average person.
The most helpful piece of advice I have ever been given came from one of my professors at university, who was a long-time sufferer of ME and invited me to his office when I was first diagnosed with it. What he told me has stayed with me ever since, and it is this:
‘Live joyfully within your limits.’
I think that phrase is beautiful. There is so much to unpack – as I have described above, it’s about accepting your limitations and not pushing yourself to do more than you are capable of, but the important addition here is the word joyfully. My limits don’t hold me back from happiness. My limits don’t mean I can never smile or laugh again. Accepting my inability to do certain things is simply the route to finding true joy.
Can a warrior ever be truly happy? If someone is engaged in constant battle, can they ever truly relax?
But what if you set aside your weapons and start living peacefully again? What if you begin to work with your illness, to give your body what it needs in order to be able to do the things you enjoy? What then?
For me, the latter is definitely what has given me the most joy. Once I accepted pacing, and rest, and taking my medication and looking after myself and reaching out for help when I need it, guess what happened?
I was able to write again.
I had gone months without being able to read or write. I couldn’t hug my partner because of my pain. I couldn’t hold a conversation for longer than a few minutes and I couldn’t answer even simple questions. But, when I stopped fighting my symptoms and started to work with them, I suddenly found myself improving, tiny increment by tiny increment. Giving my body the accommodations it was so desperately asking for allowed me to use my precious time and energy to do what I wanted again.
Another song lyric helps me to illustrate my point, this time from Twenty One Pilots’ ‘Holding Onto You’:
‘Tie a noose around your mind,
Loose enough to breath fine,
And tie it to a tree, tell it ‘you belong to me’,
This ain’t a noose, this is a leash, and I have news for you,
You must obey me.’
I believe that Tyler Joseph is talking about his struggles with mental illness here. He isn’t fighting his mind; he’s controlling it. That is a key difference. Charlotte relates so much to this lyric in terms of her struggles with mental health that she actually has a tattoo for them, of a tree behind her left ear, which you can see here:
When I first heard this verse, I connected with it almost instantly, because that’s exactly how I see my relationship with my illness – it is about control. I can’t fight my illness; it’s an established part of my life that isn’t going to go away any time soon. But I can control it. Through my strategies and management plans and coping mechanisms, I am able to get a handle on my symptoms and understand how my illness works, which means I can prevent crashes while still being able to do some of the things I enjoy. That is what living joyfully within my limits means to me.
I heard it put wonderfully once by a nun who worked with people suffering from Parkinson’s Disease. Her motto was:
‘Parkinson’s, you might rent a room, but I own the body.’
Again, I think the key symbolism here is about control. Illness doesn’t need to rule your life for you to accept it. I like to picture my illness as a shadow, a sort of dark companion who is always at my shoulder, coming along with me everywhere I go, following my every movement. I can’t cut off my own shadow. I can’t magic it away. But I can control it; I am the one deciding where we go and what we do, and I am the one who makes the decisions about my life.
That is where I find strength. Not in a battle that I cannot win, but in an acceptance of something that gives me back control over my life.
But isn’t that just like… giving up?
I don’t think accepting your illness means you’re giving up at all. And here’s why.
Are you giving up on your ability to fly simply because you can’t defy gravity? No, because your body was never capable of it in the first place. Trying to achieve something that is objectively impossible is just demoralising and degrading, especially when the blame is placed on you for not fighting hard enough.
In the same way, illness, both physical and mental, can prevent you from being able to do certain activities and tasks, and trying to fight this is almost nonsensical. There is no way of magicking the illness away. There is no miracle cure for long-term health problems. The sooner that we accept this as fact and begin to work with our illnesses rather than against them, the sooner we can begin to heal and grow and learn to manage our symptoms in a way that brings us joy and fulfillment.
(Charlotte: I think I was 17 and sat on the balcony at my dad’s flat overlooking the River Thames and my cousin turned to me and told me it wasn’t about finding that mythical cure which I was so desperate for, it was about managing my brain and my illness so I could still live my life, and it took me another 5 years or so to put this advice into action but when I did, it was the best thing I’ve ever done).
This isn’t giving up. This is accepting reality and beginning to move forward, and it was a crucial step for me to take in order to really get a handle on my illness and start to be kind to myself. That isn’t what giving up looks like; it is what healing looks like.
So, I am not a warrior. I am not in a battle with myself or anyone else, and I don’t have to fight my symptoms every day. I live with them. I embrace them. And, because of that, I control them.
Also, I’m a pacifist, so. Who wants to use battle imagery anyway?