I think the only time I ever looked in the mirror and was happy with what I saw was after my body stopped digesting and tolerating food for several months.
That probably says more about my own self-image and societally impacted opinion of “how a woman should look”, but bear with me. I’ve been putting off writing this post for a while because I haven’t really figured out how to articulate what I’m trying to say, but I think that’s the point.
My entire life I struggled with my weight. I first had EDS symptoms in 1993, and I distinctly remember being the last one in the whole school to finish the cross-country, did everything to get out of P.E. and really struggled with running around like the other kids because I was in so much pain. I can’t recall a time that I wasn’t in pain (except after going to the cinema in Florida when I was a teenager and somehow the chair was so comfy that for an hour afterwards I was pain free. A short-lived miracle!)
After a while the pain just becomes part of what is normal to me, but when it comes to physical exercise (especially with my propensity to sublux) things become more difficult.
At four foot 9 (and a quarter!), keeping my weight in check hasn’t been the easiest. The biggest I’ve been is a size 14, and I floated around a 10-12 for most of my teenage years and early twenties. While, I know, this is no where near ‘fat’, I have spent most of my life surrounded by tall, glamorous gorgeous girls so it never really did all that much for my self-esteem.
When I lost a huge amount of weight quite dramatically, it was the silver lining to being so unwell with these new illnesses. It was then that I started to realise my complicated relationship with food, exercise, society, social media and my health.
Chronic illness means uncertainty. I never know how I’m going to feel from one day to another. Everyone has different experiences and different symptoms, so I’m just sharing my personal opinions on this. I’m sure it’s different for many.
It’s a vicious cycle: pain & subluxations means inability to move. Inability to move leads to deconditioning which makes the situation worse so it’s all about super small and gentle building blocks. These start building up more and more and it’s exciting and I want to exercise like everyone else. I try. And I injure myself. Or my hormones do something weird or I sleep funny. Or y’know. My body. My body falls back again and I have to summon the courage to start right from the beginning. To start from walking around my flat, to walking past a few houses.
I’m always really surprised when my physio or my osteopath tells me that my body is actually really physically strong. And actually, despite how dizzy I get or tired or falling out-y, it is. My muscles are there. Which is kinda cool.
The other side of this is food. I gain weight very quickly. Being so small, I gain weight on half of what a normal person would. However, 1) I love food and 2) the body wants what it wants. I’m not even talking about it in terms of ‘unhealthy’ cravings. The more unwell and fatigued I am, the hungrier I get. It’s this constant gnawing, painful hunger. My body is so tired that it’s screaming out for energy. Where do we get energy from? Food?
My body needs food to heal and recover during a flare and I’m not going to restrict myself, but I do need to be mindful.
Balancing that need to eat and rest to heal can be extremely difficult when it culminates in weight gain. I know that I am far, far from overweight, but I look at myself in the mirror and all I can see is the damage caused by years of subluxations, the weird way my joints sit in their sockets and the increasing softness around my form.
As much as I hate to admit it, social media has played a huge role in how I feel about my ability to exercise and the way I look. I see hashtags like #strongnotskinny, girls declaring how your ability to exercise is all in your head (general rambles on that concept here!) and all you need to do to push yourself, and gorgeous #postworkoutselfies and all I want to do is go to a barre or spin class. It is quite dangerous (and again, although I know better I still fall into the trap) to constantly hear the message of pushing past your comfort zone, no matter what, by people not qualified or understanding enough of our bodies. I could say that I’m going to go for a run right now! Yeah! It’s great for you! Woo!
But my knee popped out just getting out of bed. So…y’know…common sense has to prevail sometimes.
In my head, when I feel a bit better, I tell myself that I can do these intense workouts. I can do them. I can. But I can’t. My body isn’t ready for them. Even building up can take six months (I build muscle at a third of the rate of healthy people). It hits your ego and your self-esteem hard. A huge part of the wellness scene, especially in a city like London, is all about what work out you’re doing that day, and designer gym clothes have outstripped the latest it-bag as the “in” social symbol.
While, in theory, I know better, in practice it’s more difficult. Just saying to yourself “don’t compare yourself to others” is much easier said than done. Wanting to go out and exercise and “look after myself” in a traditional way can be extremely frustrating. I also know from years and years of trying to find medication that worked what havoc that can play on your body. Weight gain, weight loss, stretchier collagen, dodgier gut, lactation (yes, really!)…having a chronic illness means that our bodies are put right through the ringer just in a constant effort to get through the day.
With all that being said, I know the transformative effect on my mood just making the effort to dress up and look “nice” can make. My mum used to treat me to getting my hair washed and blowdried when my pain levels were through the roof, my friend Lucy would come over and give me manicures (with some pretty epic Pokemon nail art!). Even just getting in the shower after not having the energy to after days, washing my hair, taming it of it’s natural jew fro, putting on some make up and a sweep of red lipstick changes how I feel about myself. I’ve recently taken to slouching around in whatever I can grab, but putting on a pretty dress and looking at myself in the mirror, smiling and feeling that I don’t look half bad, definitely helps.
It sounds silly and superficial, but I find that I have so little control over my body, that I need to feel proud and happy about it where I can. I’m still struggling with accepting my physical limitations (which sounds ridiculous considering I’ve had them for as long as I can remember) and along with them the impact this has on my outward physical appearance. No matter how many times you read about “loving yourself” and “you’re perfect just as you are”, sometimes that doesn’t work. You want to be tall and glossy and gorgeous and healthy and doing yoga at the beach. But, as with everything, we try and deal as best as we can and we keep trying. No matter what.