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The Side of My Invisible Illness You Won't Notice When I Put on My Brave Face

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I have a chronic illness, an invisible illness. You may see me sitting here trying to smile and look healthy, but let me tell you what you don’t see in this few minutes you’re looking at me, in this hour you’ve spent with me or at this appointment I’ve managed to get to. 

This morning I woke up in pain again, feeling nauseous and thinking Here we go again. Before I have even dragged myself out of bed I’m dreading the day. I have things to do but at this point I don’t know if any of them are possible but I don’t give up all hope. I walk to the bathroom and proceed to vomit. Once I feel able to leave the bathroom I go and wake my children and make sure they have everything they need for their day. I make sure they’re washed and have brushed their teeth, but remember I’m still in lots of pain and nauseous. I get changed and reluctantly go out. I give my children a lift to college while putting on a brave face, but remember I feel sick and I have the constant worry that I may vomit. The pain is bad, but remember I’m still putting on a brave face. I eventually make it home and try to do the dishes, feed the animals and do the laundry, but remember I’m nauseous and doing the dishes and feeding animals makes me gag, so I vomit once more. I’ve survived so far, so let’s keep this brave face on and try some more.

I have a meeting with a friend. I don’t want to cancel because I have done that many times before because of this illness and I’m not doing it again. I start to get changed but the pain is bad so I reluctantly take my painkillers. I take a shower and get ready, adding lots of makeup to cover my pale skin. I already have no energy left but I must carry on. I vomit once more and touch up my makeup again. I’m anxious about leaving the house as I’ve vomited three times already but I must try. Eventually I get out the door but as usual I’m now running late. I get to my meeting place apologize for being late again and now I can relax a bit, but remember I’m still unwell and still worried I may start to vomit but I’m wearing my brave face like a pro.

While I’m sitting there I can see people who know of me, the people who know I don’t work and don’t, so they say, “contribute to society” and they’re not hiding their disapproving stares. One person even says, “So you’re out again then,” sarcastically like I don’t have the right. I carry on with that brave face throughout my meeting because the last thing I want is any pity. I finish my meeting and go home. I do everything a regular mother does like tidying, cleaning, going to the shop, hovering, cooking, picking up children and many other things, but remember I’m doing this while in pain and occasionally vomiting. Then I sit down and think about my day and cry because this is my future. Struggling every day and trying to keep that brave face on is a job in itself. 

There is no cure for my illness but worse still there’s no cure for ignorance. This isn’t a rare thing because when you can’t work you’re often judged and you’re often added into the same category as that of people that don’t want to work. It’s easy to say ignore them but is so much harder to actually do that. I feel like people are embarrassed to be seen out with me and I feel like I give my family a bad name. I have even been called a bum and a benefits-scrounger by so-called friends. Needless to say I no longer call them friends. Please don’t judge. Just ask me why I don’t work and why I’m always late. Ask me why I look well when I’m not. Just ask me that question and after my answer you can then make your judgments. 

What you’ve read above is a relatively good day. These are my daily symptoms. You see, I have cyclic vomiting syndrome and when I have a full episode I can’t do a thing. I can vomit every five to 10 minutes for anything from hours to days at a time. It’s hard, but when I have these so-called good days I try to make the most of them and keep that brave face. I try to carry on no matter what and only when I physically can’t do anymore will I stop. I refuse to let this win and I will try and make the most of the good days no matter what misinformed people think. 

I don’t want pity, I want understanding, and that’s all anybody really wants. 

Originally published: July 12, 2016
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