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On Body Image & Chronic illness

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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.

Oh, gluten and dairy, I do miss you.

Oh, gluten and dairy, I do miss you.

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.

But pretty places help too! Typically, here I am falling over in Ireland.

But pretty places help too! Typically, here I am falling over in Ireland.

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.

20 Comments

20 Comments on On Body Image & Chronic illness

  1. abi
    July 14, 2015 at 6:00 pm (2 years ago)

    you’re like me.. natural instinct to push push push.. it is sooo hard to be ‘sensible’ in fact i hate being sensible and have fought it a lot through my life… i now try to be good and play the eds chronic illness game.. i am still only on 20 foods… and i stick to this like glue because i feel so awful when i don’t that its scary and not worth it.. but that makes me want to blow out in other ways.. or eat more weird (but q tasty) cake in a cup… but then my body complains of too much fibre! agh! its just having so many unchosen limitations and being an enthusiastic passionate person combo that makes this agonising at times… can i ask – why do you develop muscle at a slower rate than others? i wonder if i do too. also, the time i looked at myself in the mirror and liked what i saw was when i was so sick and had just lost 2 more pounds unintentionally in a week and felt so ill.. messed up mind of mine! that point was a wake up call for me, id rather be a bit bigger and feeling well, than skinny (for me) and feeling so ill all the time. it only took a year and a half of feeling ill pretty much every day! good luck with this flare up, i hope it runs out of steam soon and you can gently work your way back closer to where you want to be. abi xxx

    Reply
    • Natasha Lipman
      July 14, 2015 at 6:09 pm (2 years ago)

      Thanks Abi!

      Yes, fighting against that natural instinct is one of the hardest things, isn’t it?! I found that doing a super long rotation and including foods that helped me really made so much of a difference. I went from a handful of foods to pretty much being able to eat whatever (which, in its own way is a challenge because if I can eat a burger/pizza and not immediately feel like I’m going to die it makes it so much more tempting!)

      I used to see a specialist EDS physio and she said that it takes EDS dudes three times as long to build muscle. Fun times all round. I’ve also found that I lose it so quickly, so when I really need to rest rest, it’s that difficult conundrum of how much to push!

      Good luck to you, too! I really hope you start feeling better soon !

      Reply
  2. abi
    July 14, 2015 at 7:50 pm (2 years ago)

    my muscles goes so quickly too… i bet that is a thing too! who invented EDS? soooo mean to make it harder for us to make muscle! i am trying to get stable on my 20 foods (though tbh.. i think i lost brazil nuts yesterday… who want brazil nuts anyway?! 19 is much cooler than 20 anyway).. once i get stable, then i am definitely hoping to start to try teeny tiny things on long rotations as you suggested. i have been told that i have to have 7 days clear of nausea (my tell tale symptom) before i can introduce anything because my MCAD has been totally rampantly out of control.. i have got up to 4 days in a row twice this month (which is a record since xmas 2013!)… so hoping that i am heading in the right direction.. fingers crossed. xxx thanks again for all your support and inspiration, i identify with so much of what you write and you have really helped me.

    Reply
    • Natasha Lipman
      July 15, 2015 at 9:44 am (2 years ago)

      Pah, brazil nuts. So overrated. But a good source of selenium, I hear! I’m so glad I’ve been able to help. I found that being slow and gentle with MCAD symptoms is super important, but breaking past the fear of food that builds up, and only when you’re ready to is key. I wish you all the best and send gentle spoonie hugs for better days to come!

      Reply
  3. Jen Farrant
    July 14, 2015 at 7:51 pm (2 years ago)

    yes yes yes yes YES. I find it all so difficult, I used to be uber fit and now I have whacked on 2 stone in a couple of years. But I am still walking and swiming as much as I can.

    I have found wrapping my head helps as does good quality make up – especially lipsticks.

    but I hate this. HATE IT. I hate how my body feels like it is utterly betraying me. Then I feel guilty, I am a feminist and shouldn’t care about all of this. But it is so damn difficult.

    Fuck you EDS

    Reply
    • Natasha Lipman
      July 15, 2015 at 9:42 am (2 years ago)

      Agreed – and I think it’s ok to be angry and frustrated about it, especially when you try everything you can! But a good red lipstick helps 😉

      Reply
  4. Casey
    July 14, 2015 at 8:48 pm (2 years ago)

    I’m so glad you decided to share your story, and this post really is such an important topic for members of the chronic illness community and just everyday girls. It’s so sad that today, no matter one’s individual health, it’s nearly impossible to escape society’s definiton of “healthy” – tall, toned girls that can jump from spin class to eating a huge burger to yoga and look gorgeous doing it! Although I can’t relate exactly to your story, when I was diagnosed with celiac disease and lost 20 pounds (I was already on the healthy skinny side), it’s amazing how conflicted I felt gaining back the weight. I knew I was healthier and stronger, but people still would say, “I wish I had celiac disease so I could be as skinny as you!”

    Health and beauty are weird things, especially when tied together. But I’d say we’re kicking both their butts the best we can every day! 😉

    Reply
    • Natasha Lipman
      July 15, 2015 at 9:46 am (2 years ago)

      Thank you so much, Casey. I definitely agree. :Unfortunately I’m surrounded by a lot of girls that look like that so it’s always been difficult. But the increasing obsession with this on social media and the normalisation of pushing yourself and faddy, extreme diets and work out routines can be particularly dangerous. When I lost a tonne of weight really quickly everyone just assumed I had an eating disorder but at the sae time everyone was like “you look so good!” and then when I gained a bunch back and looked healthier everyone was like “yes, you were far too tiny”. You can never win. I guess it’s about finding what makes you feel best! And kicking butt, duh 😉

      Reply
  5. Berta
    July 15, 2015 at 12:01 am (2 years ago)

    I can relate to this post so much! The society leads us to believe that the way our body looks is in our control, but after being overweight for the last five years and trying everything from restricting all food, to restricting some food groups to trying to find a balance, from going for a jog everyday, to doing Pilates everyday, to doing some gentle yoga everyday, I think I can safely say that sometimes the way our body looks is not in our control. It is so difficult to accept this, and to stop comparing myself to others, but for starters I’ve begun comparing myself to different people, for example those who might not be in perfect health, to help me realise that despite my imperfections, I still have a lot to be grateful for. Thank you for writing this post, even though it was difficult for you!!

    Reply
    • Natasha Lipman
      July 15, 2015 at 9:48 am (2 years ago)

      Thank you Berta. I believe they say that comparison is ultimately what we shouldn’t be doing – but honestly, I still struggle with it every day!

      Reply
  6. MurderOfGoths
    July 19, 2015 at 10:11 am (2 years ago)

    I feel much the same, I’m only 4ft 10 and when I first started getting the pain I was a size 10, now I’m a size 18/20 and it really knocked me. I hated everything about my body, felt like it had let me down in every way.

    I discovered, like you, that looking nice made a difference to my mood, and I’ve been lucky enough to get involved in the plus size blogging community, so my weight is much less of an issue to me now. Which gives me a little bit more energy to deal with the pain.

    Reply
    • Natasha Lipman
      July 20, 2015 at 12:15 pm (2 years ago)

      That’s so great to hear. It can be extremely difficult.

      I’m really glad you’ve found a community that helps you and makes you more able to deal with everything. Gentle hugs x

      Reply
  7. Francesca Stout
    July 19, 2015 at 2:01 pm (2 years ago)

    Thanks for taking the time to write about this, Natasha. I can relate on so many levels. I have Joint Hypermobility Syndrome, not as severe as EDS, and it’s only my shoulder that subluxes, but my joints are very prone to injury, and I also have severe and complex ME / CFS, Fibromyalgia and arthritis. I am very obese, currently 17 and a half stone on a 5 foot 4″ frame. I’ve had ME for 25 years. I can SO relate to seeing food as energy, and trying to ‘fix’ that fatigue with food, and then feeling guilty and unhappy with my size, and trying to exercise and just making myself ill. I have now broken the exercise cycle, as my OT says that I cannot exercise at all until my health improves in other areas. And yes, I regret to say that I’m sometimes seduced by all these images on social media of people doing yoga (I can do that, right? I mean, it’s only YOGA, for Pete’s sake, what harm can it do? Er…quite a lot, actually). But I have to remember, I do not have the same physical starting point as healthy people, and I need to work on just walking a few paces further from my front door before trying to lose weight.

    Reply
    • Natasha Lipman
      July 20, 2015 at 12:17 pm (2 years ago)

      Thank you for your comment, Francesca.

      Sometimes I think “if only I was taller, I’d have one less thing to have to worry about” 😉 I definitely know what you mean about yoga. I went to a class and ended up popping a rib out. That was a new experience! I think it takes a really long time and a lot of strength to really learn to only listen to our own bodies, and not get seduced by everything around us.

      I hope your energy picks up a bit more soon! x

      Reply
  8. May
    July 19, 2015 at 3:07 pm (2 years ago)

    EDSer myself with severely unbalanced hormones, my weight may vary with more than 40 kgs. Never been thin since I was a baby, my reflux watched into that. Now that I am under hormonal treatment, my body stabilised a bit re weight gain and loss, still a bit complicated being able to take 10 kgs in 2 weeks and lose the same without moving in 4 months. I’m wheelchair bound.
    You’re asking about this permanent pain hunger, it is actually hormones linked to. Your body makes your endorphines and adrenaline through your adrenals directly from sugar (not fat), meaning when pain is intense you’re craving for sugar. Which happens to me several times a day lol seing my adrenals are unbalanced, making the whole EDS pain worse. This is why it is sooo hard to keep a stabilised weight when you’re in high pain levels constantly, meaning that if you manage to, you have a strong will and your adrenals are not that bad.
    I need to add that in pain constant diseases, you forcefully end up in adrenal fatigue for the least, or secondary adrenal insufficiency for the unlucky. AI happened to me at 25, before my EDS really kicked in though. Always be aware of adrenal fatigue symptoms because they worsen your pain, meaning they worsen your condition : pain means lack of sleep meaning exhaustion meaning pain and the circle is made.
    Take care!

    Reply
    • Natasha Lipman
      July 20, 2015 at 12:18 pm (2 years ago)

      Phew – it never ends does it?! Thanks for the info, and sending you lots of spoons and gentle hugs :)

      Reply
  9. Angela
    July 20, 2015 at 2:43 am (2 years ago)

    My niece/cousin has EDS. She’s an amazing young woman. She shared this page on Facebook and I’m glad she did. She’s had chronic pain for a long time. I have not and as such I’ve not really given it a lot of thought in my daily life. Thank you all for sharing your experiences. It helps me to better understand what she, and so many others, are living with every day. Take care!

    Reply
    • Natasha Lipman
      July 20, 2015 at 12:19 pm (2 years ago)

      Thank you so much, Angela. I really hoped that people who were related/know people with EDS would find my blog. Your words mean a lot, and I’m sure they do to your niece too!

      Reply
  10. Maria
    June 2, 2017 at 6:23 am (3 months ago)

    This rings so true for me. When I see photos of myself all I can see is how my body has changed. It makes me feel old. It’s taken years to find a good enough yoga class, and believe me it’s not yummy mummies in expensive yoga gear. Even then I’d keep trying to do positions that I shouldn’t do, because I want to be like everyone else, I want to challenge myself, then for weeks after my shoulders are screwed and I remember why I don’t do that move. Learning to respect my own limitations has taken years, and I still slip up.

    Reply
    • Natasha Lipman
      June 15, 2017 at 10:12 am (2 months ago)

      Sorry for the delay in replying – I’ve been taking a blog break! Yes, it’s definitely hard not to push yourself, especially if you’re in an environment where others are doing the things you want to. You’re right, it’s definitely something that takes time, and it is very easy to slip up! I hope you manage to keep finding things that help you!

      Reply

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