Body image and chronic illness

Why is it so hard to love ourselves when we are ill? How can we build a better relationship with ourselves?

Aug 05, 2024

Trigger warning: body image discussions

My therapist picked up early on in our interactions that I had low self-esteem. Was it the words I was using to describe myself, or was it my body language and the way that I was sitting perhaps? Maybe a bit of both. I felt the familiar sting of shame flush in my cheeks. Was it really that painfully obvious to her that I disliked myself? She told me for ‘homework’ that I had to stand in front of a mirror, really look and take all of me in, and say nice things to myself. My first thought was ‘Argh cringe’ and I laughed, but then I could feel myself wanting to cry. This surprised me. Where did those tears suddenly come from? I was shocked at how hard this was going to be. Now I’ve never had an amazing relationship with my body, especially growing up around social media, but it’s never been this bad before. So what’s going on I wondered. I noticed that these changes to my body image have slowly creeped in over the last few years, quite insidiously. Was it down to my changing body due to my chronic illness? I wasn’t sure. So I sat down and did what I always do to try and figure out how I’m feeling, I wrote it all down in my diary. A whole list of things started to pour out of me, all of the possible reasons why I felt like I did about my body…

Since becoming ill, I’ve struggled with the actual physical changes that my body has been going through. When I first started exhibiting symptoms ten years ago, I lost a lot of weight, which looked strange on my 5ft 9 frame, but recently I’ve started to put on weight. I find it difficult to exercise and because I don’t work at the moment I find my weight fluctuating constantly. Also, due to the arthritis my joints can often swell and look red. I can start to see minute changes in my finger and toe joints, nodules forming where they shouldn’t be. I keep getting bruises everywhere from bumping into everything due to brain fog, my stomach often looks bloated from IBS. I sometimes look fatigued with dark circles under my eyes, the healthy colours stolen from my skin. I often don’t have the energy to maintain nice hair, make-up or to dress up cute. Baggy t-shirts and joggers are my go-to now. You can sometimes find me limping or straining to breathe as I walk up stairs. Soon I will have to contend with redness and bruises around my injection sites when I start medications. But it’s not only the physical appearances that bother me, it’s the difference in how my body feels. The extreme fatigue and joint stiffness makes it feel like I’m walking through treacle. Inside I feel like I'm 90. My body feels heavy, worn out. I can’t move in a care free manner anymore. I have to think about how I move myself through this world. I feel held back from participating fully in my own life. Some days I can't even sing along to my favourite songs because my lungs get so worn out with fatigue. I feel like a bird unable to join in on the dawn chorus.

I find it hard being seen as separate body parts by Doctors, instead of a whole person. When I see the Cardiology team I’m just a heart, when I see the Pulmonary team I’m just lungs. You get prodded and poked and tested repeatedly. You’re made to feel like a failure or a liar when test results come back negative, yet symptoms still persist. You feel like faulty goods when a diagnosis finally gets revealed. ‘There is no cure’, they say so casually. I practically have to dissociate from my body each time I get bloods taken, scans done, invasive procedures carried out. It’s too much to be inside my own body.

I feel like I can’t trust my body anymore, like it’s constantly letting me down. I give it everything I can; exercise, stretches, good food, supplements, therapy, I try to reduce stress, yet flare ups still happen. It’s never enough. I’m never enough. I often don’t feel in control anymore. How can I learn to trust my body again after such a blatant betrayal? How can we get back to being on the same team?

I can’t help but feel jealous or bitter towards people that are healthy and don’t realise how good they have it (even though I’m probably guilty of doing the exact same thing). I can’t help but feel angry at the ones that abuse their bodies with binge drinking, late nights, junk food, and wear stress like a badge of honour, yet they still get to do everything they want to do and thrive at life. How is that fair?

It’s hard to watch others do the things you so desperately want to do. Your hopes, dreams and life achievements are put on hold, maybe permanently. Opportunities are passing me by. I used to love to go on hikes and walk for miles and miles in the countryside, but most days that’s a distant dream. I want to climb hills not climb into bed. I feel I’m losing parts of my identity. Who am I when I can’t do the things I love, the things that make me, me? My body used to be a powerful tool to get me where I wanted to be, but now its rusty, blunt, broken.

If you use aids to try and help yourself e.g. walking sticks or wheelchairs, people give you strange looks, but if you don’t use anything and you ‘look healthy’, people assume you’re lying about how unwell you really are, or they don’t give you the support you so desperately need, so where do you fit in? It’s exhausting constantly having to explain yourself, or making yourself sicker by contorting yourself to what others want and need first. The majority wins. To be accepted by society, to be safe, you can’t stand out, not in a disabled or ill kind of way. So you start to hide. You start to lose parts of yourself. Either you face vulnerability or you start to disappear.

The worst part is how my low self-esteem and poor body image effects how I interact with those that I love. My husband constantly tells me I’m beautiful, yet I feel myself pushing him away. I hate that it effects him too. It’s ironic how hatred for yourself can push away love, the one thing that it so desperately needs to heal. And this last point is why more than anything I want a better relationship with myself and my body image. I want to surround myself with more love, that really is the only way to truly heal. Hatred is never the cure.

So what can we do about it? How can we learn to love ourselves, even when we’re ill?

These are some of the things I have found useful on my (ongoing) journey back to myself:

Let yourself mourn & have a period of grief. Especially when you’re first diagnosed or going through yet another change to your body. Let it out, have a good cry, be angry. Let the emotions flow through you, and then move on. I’ve found that when I try to hide my emotions or bottle them up, they stay in my body and turn toxic. I allow myself to feel now without guilt. It’s a shitty situation we’re having to deal with, its ok to be upset. Just try not to stay in the bad emotions for too long, let it out, and then move on. This isn’t a one time thing, change will continually happen and we need to learn to go through these cycles without getting stuck in one part of it.
Positive self talk. I know this is easier said than done, but it’s so important to start talking to yourself like you would a friend. We need to challenge those negative thought patterns and get rid of those negative phrases and words we use to describe ourselves. If your best friend was ill, how would you speak to them? I bet you wouldn't say I hate you (Sounds ridiculous when you say it like that doesn't it?). Your body is your friend. I know it may not feel that way, but it really is trying to do it’s best under tricky circumstances.
Don’t punish yourself when your body does something you wish it wouldn’t e.g a flare up, losing control of a bodily function. Use this time to be extra kind to yourself. Instead of hating yourself and beating yourself up, can you instead treat your body well? This is the exact time it really needs love. Can you give it some well deserved self-care; a nourishing meal, hydration, a little treat, a nice bath or massage?
Remember you are more than a physical body. Try not to over generalise. Just because one part of you has decided to malfunction today, doesn’t mean the whole of you is ‘wrong’ or ‘useless’. You have a beautiful soul too. Even on the days you feel you ‘look awful’, that doesn’t mean you are not deserving of love. You have so many other brilliant things that make you, you. Creativity, caring, loving, smart, talented, resilient. Make a list of all the great things about yourself and look over this list when you need a little boost or reminder. You can even ask friends and family to add to this list, as they are often the ones that see us better than we can see ourselves.
Find comfort in community. Find people that understand what you are going through e.g either in person or online. Chat to others going through it. We can big each other up. We can relate and empathise. There is comfort in solidarity.
But try not to compare yourself to others. We can all fall into the trap of spending too much time on certain social media sites, comparing ourselves, which end up making us feel worse. Remember that most people only post their life highlights, not the ugly parts of life. We’re all guilty of it. I don’t exactly post pictures of my hairy legs because I’m too fatigued to shave them, or my bloated IBS tummy, but I can assure you they are there! If you feel yourself getting a bit too drawn into it all, take a break from it for a while. Go do something else instead, like a creative task or a nice nature walk, or cuddle a loved one (including pets), something nourishing to the soul. It’s amazing what a bit of time away can do to our perspective, clarity and peace of mind.
Try to focus on the good that your body still does for you. Again, easier said than done I know. It might sound strange, but the more I read up about human biology, science and all the amazing things my body does for me each minute of the day, you can’t help but have a new found respect and appreciation for it. If you’re really struggling with this, perhaps make a gratitude diary, but focused on the things your body allowed you to do today. Note down one thing each day E.g. I am thankful that my body allowed me to walk outside to the shops today, I could feel the sun on my skin, I could breathe in the lovely smell of the roses outside. It allowed me to hug my husband and feel the warmth of his embrace. It allowed me to enjoy eating that yummy bit of cake. It allowed me to speak to my friend over the phone and have a giggle. What can you come up with?
Remember there is beauty in our differences. I know this sounds cheesy, but it’s true. Everybody has imperfections but that’s what makes them unique. Ask someone who you love what they don’t like about themselves and they will say something like ‘I hate my big nose’ or ‘I don’t like my thighs’, and I bet you will think ‘what the hell, that’s so silly, I love those things about you’, or ‘but you’re so pretty/handsome, how could you possibly think that about yourself’. I bet they would say the same right back to you! For instance, my partner doesn’t like his stomach much, he keeps saying he needs to lose a few pounds and pokes at his tummy, but I love every single bit of him. It’s squishy and warm and cosy and he gives amazing hugs. It pains me to think of him wasting a single moment of his life worrying about his stomach and what others may think of it. But you know what, he doesn’t actually let it stop him from doing anything. He still strips off as soon as we get to a beach and runs into the sea, swimming away like a happy little sea otter. I really admire him for that. We always focus more on our own things, people don’t notice as much as we think.
And the biggest one of all. Life is too bloody short to worry about it. I keep thinking back to my mum. She always had trouble with her body image. She lived in the era of those slim fast milkshakes, 90’s skinny supermodels and when people mocked JLO for her big bum (they wish they could look as good)! My mum didn’t like her own big bum or her legs (although my dad always thought she was an absolute goddess, he still says she was the most beautiful woman he’s ever met). She was beautiful, but she often didn’t think she was sadly. And in her last days of her life when she was dying of bowel cancer, I visited her in the hospice. She pulled me in close, and between the morphine haze she told me with such passion ‘don’t hold yourself back from enjoying life’. I knew exactly what she meant. I bet she wished she wore that swimsuit and got her ‘big bum’ out more, and swam in the ocean carefree while she still could, or ate that chocolate bar without punishing herself for days afterwards. I bet she wished she could have danced the night away with those legs one last time. She was only 47 when she died. How many hours did she waste hating her body, when she could have been enjoying it? Life is too short. We have to come to terms with the fact we have this one body, this one life, and we have to make do with it the best we can.

I know that I have a long way to go on my journey to actually loving my body, but I’m banishing the word hate from my vocabulary. We deserve better.

Do you know what I’ve always wanted to do, but would find absolutely terrifying? Being one of those nude life models for art students. I may set it as a goal for myself to do it on my 40^th birthday. Let it all hang out, arthritic back and all, and make beautiful art from it. I could then hang it on my wall and be super proud of myself that I did it. I bet that would make future 80 year old me smile every time she saw it.

What about you?

Has your body image changed since becoming ill? or has it made you care less about what others think? Have you found ways to cultivate a better relationship with yourself? I would love to know in the comments.

In my bones...

Discussion about this post