The impact of chronic illness: body image and self-esteem

I hate my body today. You’re not allowed to say that really, it makes people uncomfortable.

But it’s how it is for me today.

Our society conditions us to assume that when someone says something like ‘I hate my body’, they will go on to talk about not being thin enough, or the right shape, or not attractive enough.

That’s not the aspect of negative body image I’m referring to. I'm looking at it from the inside out; chronic illnesses.

Body image issues and chronic disease. This combination is a difficult bit of glass for young people and young adults to swallow.

The bodily changes that occur in chronic disease are vast and not always obvious at first glance. Self-care doesn't seem to help much. Body dissatisfaction is common, and mental illness can follow.

Before we get started, what is body image? It's the way we think and feel about ourselves, our physical form. These thoughts, our concept of physical 'self', go on to impact our behaviour and mental health.

CHRONIC CONDITIONS

As I write this, I’m monitoring a vague dull pain in my flank, trying to determine if I’ve pulled a muscle; or if I’m going into kidney failure. I test my urine for traces of blood and protein, key signs of renal dysfunction, every two weeks. And think about it constantly in between.

For context, I was recently diagnosed with lupus. I'd been feeling rubbish for a long time, but I didn't have any significant symptoms until a little while ago when my joints started to swell. Off to the doctor, tests, diagnosis.

Chronic illnesses are time thieves. Blood tests, appointments, referrals, more appointments, more blood tests, physical examinations, confirmed diagnosis, monitoring, more blood tests, appointments, waiting in line, doctors running late, more blood tests. It's a never-ending merry-go-round of commitments that leave you too exhausted to perform basic self-care, let alone ride out into the sunset to party with your friends. Invisible illnesses are cruel beasts.

Chronic diseases are also happiness thieves, for example, chronic pain, disordered eating behaviours, insomnia, medication, side effects, depression, anxiety, lack of brain focus, skin problems, greater risk of cancer, relationship strains, altered appearance, mobility difficulties, and it can be a negative feedback loop, once your defences are down you're at greater risk of developing other diseases.

No matter the particular flavour of illness, those who suffer will feel the impact of one of these items on their lives. You're falling behind your healthy peers, and you often feel ashamed for not keeping up.

LUPUS

Lupus is a chronic autoimmune disease. As far as chronic conditions go, you don't really want this one. It's a complicated illness, known as the 'great imitator' because the symptoms change significantly from person to person, and it can look like a lot of other chronic disorders making it difficult to diagnose.

Autoimmune refers to your own immune system attacking your own tissues. It gets confused, and instead of aiming immune resources at pathogens like bacteria or viruses, it goes after your own cells. You make auto-antibodies, and these lock into your tissues and cause inflammation. In lupus, inflammation can occur anywhere in the body, so it's a systemic disease.

This diagnosis was made all the more painful because it’s not my first dance with autoimmunity.

CROHN'S

I’m in my 30s now. When I was a teenager, I started to get some difficult digestive symptoms which progressed over time to a Crohn’s disease diagnosis.

Crohn’s is a chronic autoimmune inflammatory bowel disease, this time it's focused on the gut (whereas Lupus goes where ever it damn well pleases). It’s debilitating, difficult to treat and often results in multiple surgeries over a lifetime (in my case, more than I care to recount). It can flare, or subside into remission, and it’s a lifelong condition that causes horrible, painful abdominal symptoms, weight loss, loss of appetite, fatigue, involves lots of medications, tricky ongoing complications like bowel obstructions, poking and prodding, interrupted development and a lot of tears.

The acute-chronic phase I’m describing here was a deeply traumatising experience but it did get better over the years, although it cost me a large intestine and bought me the life-long company of an ileostomy bag.

Once something like that happens to you, you never really feel the same ever again. I have not been a healthy person since then, although you wouldn’t necessarily be able to tell from looking at me. I can sort of remember what it’s like not to feel sick, but the older I get the more wispy those memories become.

I feel like I’ve lost a lot of good years to illness already, to my own immune system no less.

IT'S NOT FAIR

It’s not fair.

I rarely say these words about having a chronic illness, because it’s easy to shame yourself into there’s always someone out there who is worse off than you. You push down the urge to throw your hands up at the universe in exasperation.

Because, well frankly, you’re bored of the whole thing and you expect everyone else should be too. So squash into the box it goes. When you’ve been unwell every. single. day. for more than half of your time on this earth, it becomes very, very difficult to feel like you are announcing anything new to the world by talking about ‘being sick’ again, so while you’re not better, you kind of stop talking about the challenges you face by being unwell. (nb. see your therapist).

MENTAL ILLNESS

You will regret the lack of talking/processing when it turns out the box you stuffed it into was a jack-in-the-box, and those feelings spring out at a later date with a creepy clown attached to them causing you all sorts of mental health problems (nb. again, see your therapist).

I don’t hate my body openly to myself every day, but I do harbour a deeply mistrustful and betrayed psyche in relation to my physical self because of those teenage experiences.

I have a body with malfunctioning code; a syntax error introducing bugs to the system and they’re having a compounded negative effect over time. I can’t fix the underlying faults, and that leaves my mind constantly running backup.exe which monitors constantly and anxiously for the next thing to rob me of my health, or what is left of it.

It’s EXHAUSTING. I’m exhausted. My brain is so foggy, my thoughts seem to fall slowly down a ladder? (for some reason the visual makes sense to me), losing pieces of data along the way.

Everything hurts.

In chronic illness your nervous system is overly sensitised, your brain is useless, your mind is racing with anxious thoughts and the body experience is like trying desperately to swim against a strong current or wade through quicksand. It's difficult not to harbour a negative body image.

POSITIVE BODY IMAGE

Body positivity, on paper and in most practical applications, is a very good thing.

But, I think there’s a particular brand of ‘meme-ified body positivity’ which feels exclusionary of a sick person’s occasional need to, well just feel fucking miserable that they’re sick. If you're chronically ill, you're going to have body image issues of some kind.

I don’t want to have anger for the hope and positive nature of others, but sometimes it’s not what I need. People with chronic illness sometimes just need to know someone sees them. Seeing, that’s all. It’s the most supportive thing anyone could do.

Because you do feel invisible sometimes, especially if you don’t look all that outwardly sick, make-up on, hair done, no one is any the wiser that you’ve spent the previous days horizontally succumbing to the physical overwhelm your symptoms are causing; nor do they see the scars covering your abdomen, or the stoma bag attached to you for life. I have been on the receiving end of someone’s envy of my ‘thin frame’, if only they knew what it actually cost.

Chronic illness is such a frustrating experience to explain to someone who is well, the symptoms can sound vague and sometimes even trite when expressed in a neat list. Shrinking the experience down into dot points, gruesome details completely redacted. You don’t feel justified, you don’t commit to the tale, you close off your vulnerability and barely end up whispering that you need anything at all.

Even here, in this post written about chronic illness, on a chronic illness blog called chronically-ill, I’m having an easier time talking about (read: intellectualising) my emotions than going into granular detail about my actual lived, physical experience of illness.

I experienced a lot of 'think positive, you won't get better unless you do' rhetoric when I was younger. It's maddening, I'm a proponent of positive thinking, but you're not going to think yourself out of a genetically mediated disease. It’s OK to tune out the unhelpful suggestions of ’going for a walk’ or ‘you need to eat more’ and not feel like it’s enough, because truly, it's not. But anger at those you love for not understanding isn’t going to help either. I know it, you know it, and we do have to accept it. Body dissatisfaction, in some shape or form, is here to stay.

We don't have to paint on a fake smile all day long. Mope about, live it and feel it. Because what’s worse, what’s much, much worse, is the jack-in-the-box approach I mentioned earlier. You stuff the feelings inside and they spring out at you later when you least expect it, usually at a very inconvenient time.

I’m scared, I feel alone and I’m worried to the core of my being that my ‘good’ years are behind me already. But at some point, the sun will shine again and I’ll have laughter and moments of elation, but for now, steeped in misery, I share some of my journeys because these are the things I have had trouble expressing over my chronic illness journey, and hey maybe you’ve had trouble too.

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