Sartorial Spoonies: Life and style with chronic illness

As a blogger with a chronic illness, I want to use this article to show how Warwick’s own Spoonies live with, but also beyond their illnesses.  Raising awareness and reducing the stigma of chronic illness is so important; it helps to get people diagnosed earlier, and it makes the world a more compassionate, understanding place.

It is currently estimated that 15 million people in the UK have have a long term health condition or chronic illness. Some are more visible than others, but all of them are in some way debilitating and lifechanging. People with chronic illnesses have taken up the term “Spoonies” to represent them as a community; A spoon is a unit of measurement invented by Christine Miserandino, and is explained in her essay ‘The Spoon Theory’.(ButYouDon’tLookSick.com)

So without further ado, here are two fabulous ladies who have opened up about their lives and style:

Mary is a 19 year old English Literature student who has had hypothyroidism (or an under active thyroid) for most of her life.

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How does your illness affect your social/uni life?

“Mostly people would have no idea that anything is wrong with me – I am able to do pretty much everything I want to do, but my energy supply is just a lot shorter than everyone else’s, which can be really frustrating; for instance, if I end up leaving a lot of nights out early, or if I’m walking around for an hour I will be in desperate need of a nap afterwards. On worse days sometimes my legs just go – nope! – and decided that they are going to make life super difficult for me.”

Describe your personal style in three words.

“My boyfriend says cute, flowery and unique. I would say ‘overdresses every day’.”

Do you try to hide your symptoms on bad days? Or do you embrace them?

“It depends who I am with. If I am with good friends, I am bound to whinge. However, when I play hockey I try my hardest to hide it; I get tired so quickly and growing up with it has resulted in me just being the most awfully co-ordinated person in the world. […]I find it SO frustrating that it has to just be that extra bit harder for me when I am trying really hard.”

One thing you want everyone to know about your chronic illness?

“I think it’s really important to always be kind and accepting of others because you never know what somebody might be struggling with, whether that is chronic illness, other invisible illnesses such as mental health, or just other problems in their life. So if somebody says they are too tired to do something, or just needs a break, it is best to just accept it and be supportive. […] just always be kind and friendly, and if you really want to understand, there is nothing wrong with asking questions or just looking on the NHS website.”

Lucy was diagnosed with Crohn’s disease at age 12 (she is now 19).

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How does your illness affect your social/uni life?

“Thankfully, I have been in remission for 2 years and therefore my Crohn’s has had limited effect on my university experience so far in terms of my bowels. I have accommodation with a shared bathroom which luckily has not been an issue for me, however, I know if I was to have a flare up of my illness, this would be problematic.  However, an often-missed symptom of Crohn’s is chronic fatigue and this has proved difficult to cope with – especially as a first-year student where late nights and partying is frequent. The fatigue has meant that I can’t cope with the repeated late nights as well as my friends because it leaves me absolutely exhausted, knocking my immune system further and leaving me run-down and more prone to picking up illnesses. I haven’t found this to be too isolating, just disappointing sometimes. I don’t like to let my illness define me. However, it is also important to me not to hide it! It is possible to have both a chronic illness and an amazing social life! You need to surround yourself with supportive people and the social-world is your oyster.”

Describe your personal style in three words.

“Simple, Girly, Care-free!”

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Do you try to hide your symptoms on bad days? Or do you embrace them?

“Embrace! I am a firm believer in listening to and loving your body. Over the past eight years I have developed a mindful relationship with my own body, I can immediately tell when I’ve overstepped the mark on late-nights, bad food or simply just over-doing it in general. I see my symptoms as warning signs; for some symptoms, this is easier to embrace e.g. fatigue, achy joints, feeling run down. However, if it is belly cramps and diarrhoea my positive outlook is certainly challenged, these harsher symptoms are definitely more difficult to embrace because they have a controlling and preventative effect on your daily life. […] I do try my hardest to maintain an optimistic outlook despite pain and discomfort.”

Do you have any favourite make-up/ skin care products and tips?

“Makeup: I love the BareMinerals Complexion Rescue Tinted Moisturiser for every day wear, it leaves your skin glowing, healthy and protected. I have re-purchased it 3 times! I also love the NYX Soft Matte Lip Cream in San Paulo, it is a happy bright pink shade and it makes me feel bold and vibrant. I’m also an avid highlighter because I love to glow, my favourite bargain is the Sleek Highlighter palette in ‘solstice’!

Skin care: My biggest tip though? Drink lots of water!!”

One thing you want everyone to know about your chronic illness?

“I want everyone to know that it’s OK to ask questions about it! Suffering from a chronic illness is not and should not be a taboo, or something to be ashamed about! The more we talk, the more we can spread awareness and stop people feeling alienated by their disease. Everyone is fighting their own battles – some big, some small – but no one should have to do it alone!”

And then, there’s me! I have type 1 diabetes, which is an auto-immune disease where your body kills off your insulin producing cells in your pancreas. I have had this for 13 years. There is no cure.

Do you try to hide your symptoms on bad days? Or do you embrace them?

Any day can be a bad day, because there are so many variables, and on those days I put on my healthy face. The make up goes on, the heels too. I don’t like people to see me looking ill or weak. However, I recognise that this doesn’t help increase awareness about how serious type 1 diabetes can be. High or low blood sugar levels also affect my mood hugely; there is no hiding a grumpy Becci.

One thing you want everyone to know about your chronic illness?

Type 1 diabetics can do anything that anyone else can do, it just takes a little more planning. We are having to act as an organ in an ever changing environment, and live our lives at the same time. Please be patient.

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4 comments on “Sartorial Spoonies: Life and style with chronic illness

  1. Great insightful post! I love that you are bringing awareness to chronic illnesses and I love how you women are living your life to the fullest despite your illnesses. It is so inspiring to me. Sending love and success your way!
    Great post!

    Pearl || thepearlylife.wordpress.com

    Like

  2. Really good post and great awareness of invisible illness. As someone who suffers myself, it is nice to see others who have similar experiences and still manage to life their life somewhat. Thanks! xxx

    Like

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