Suffering with a hidden illness or disease, whether it be mental or physical can take it’s toll on you. But unlike visible physical illnesses, no one knows you’re suffering but you.
There is little insight into what it’s like living with conditions such as endometriosis, lupus, depression or anxiety (to name a few) and how hard suffers of these illnesses work to appear ‘well’.
Imagine you start each week with a supply of 10 marbles for each day. These marbles represent the energy you need to complete basic tasks such as showering and getting ready (1 marble), travelling to work (1 marble), doing a days work (5 marbles), travelling home (1 marble), cooking & cleaning (1 marble), getting yourself organised for the next day etc (1 marble).
Each day you wake up with your supply of 10 marbles and you mentally plan where and when you’ll use them. If you’ve woken up in pain, you might need 3 marbles of energy to get to work rather than your usual 1. That leaves you with just 7 to get through the rest of the day, including the 3 that you’ll need just to travel back home.
By mid day, it’s pretty clear that you’re not going to have enough marbles to make it to the end of the day. But this is real life and you can’t just magic up more marbles on demand! So you go into your reserves, you start running on empty. Your body, like a clapped up old car starts slowing down. Pain sets in. Migraines, headaches, stomach pains, fatigue. Your skin is breaking out and you feel cold and low. Your body is crying out for you to stop, but you can’t. You’re a grown up. You look fine and no one can see what’s going on inside of you, so you just get on with it. Like you do every day. You begin counting down the minutes til you can clock off. You take a few more painkillers, the pack you bought last week is nearly empty but you just need to make it to 5pm. Once you’re home, you can lie in a dark room and die slowly in peace and quiet.
You suddenly remember that you promised a friend that you’d meet her for a drink after work. You battle with yourself for hours about what ‘excuse’ you’re going to make up to cancel. You can’t tell her you’re unwell again, you were unwell last week too when you had to cancel. Also, she would have seen the pictures of you on Facebook on Saturday at the wedding you went to, looking happy… and ‘healthy’. She won’t understand that you used 20 marbles just to get through that wedding. That you spent the whole of Sunday lying on your sofa trying to re-energize because you were flat out of marbles. Patiently waiting for your next supply of marbles to arrive on Monday morning. She won’t know that you wasted a days leave on Friday, just so you could sit at home and only use up 5 marbles, saving as many as you could for Saturday. She won’t understand, because no one does.
When you’re living with an unseen illness, you have to plan every day, every week and every month in advance. For conditions such as endometriosis for example, life is planned around your period. No events, parties, meet ups or even weddings can be organised during this time otherwise you’re just going to have to let people down. But what if your period arrives early? or late? What if this month your symptoms are manageable so you can go out but last month they were excruciating. Everyone will just think you’ve been making it up? They won’t understand that every day, every week and every month is different. That no matter how well you try and plan your marbles, life throws us a curve ball every so often – just like it does you.
They won’t understand that sometimes, you spend days doing as little as possible trying to stockpile your marbles so you can go out and honour your commitments. They won’t understand that just going to work and doing a normal days work, when you’re feeling ‘normal’ will use up all 10 of your marbles. That’s why you can’t meet up for a coffee after work, especially because it’s Monday and you have another 4 days of this before you can rest and conserve some of those marbles at the weekend. They won’t understand that simple tasks for them, such as travelling to work on the tube or spending an hour shopping can use up a handful of marbles, especially on a bad day. They won’t understand that while you’re sitting there, sipping your tea with them, catching up – your stomach is cramping, or your anxiety is surfacing and you’re using up 3-4 marbles, just trying to appear ‘normal’.
They won’t understand because you look well. Because you tire yourself out mentally and physically doing your best to cover your tracks, to balance your marbles – just so you can appear ‘well’. That on the days that you do feel ‘well’ and have a few spare marbles lying around, you’re elated with this burst of energy and you try and do as much as you possibly can. Clean the house from top to bottom, go for a run, visit family, cook, do your washing and maybe even your paperwork. Because sometimes, for a brief moment, even you forget that you’re living life marble to marble….
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