Sorry You Can’t See My Stripes… They’re Invisible

But you don’t look sick?

Out of all the conversations I have and the people I come across there’s always one thing I hear; but you don’t look sick?

No lies, and nothing held back here – but personally regardless of what my other half says, I look like crap most days… mainly as just drying and brushing my hair some days makes me feel like I’ve done 10 rounds with Mike Tyson.

So the people that see me when I ‘look sick’ are the unfortunate souls that have to put up with my cranky ass on a regular basis. I try not to get offended when people say ‘you don’t look sick’ and will always try take it with a pinch of salt but deep down it breaks me a little each time.

Part of me never quite understands what people mean by it.

How does sick look? Should I look like a zombie? Or have a leg hanging off? Should rolling on the floor screaming till I’m blue in the face?

As far back as I can remember this is one thing I will never really get my head around. That regardless of my never ending list of crap I deal with, I apparently don’t look sick. Which obviously is a weird compliment when I feel like I look like crap because hey! I don’t look that sick.

It’s great, because nobody wants to look like the grim reaper minus the scythe, but at the same time when I’ve ventured out for the first time in months. Used up all my spoons for the week and spent a good few painful and exhausting hours to get ready to look well, putting on normal clothes (buttons and all!) it’s hard when people assume.

They assume its all rubbish so as usual the heartbreaking words ‘you don’t look sick’ follow.

As usual this is just me venting the never ending thoughts, in my forever exhausted brain. Trying to explain the daily struggles of people like me, to help those of you that don’t understand find out what goes on up here.

It’s hard putting on the front you all see, from saying I’m fine when I don’t want to explain how crappy I really am, to brushing my hair and doing normal things. The things that slowly drain my whole body and cause agonising pain. All that in exchange to feel normal for a few hours, not wanting to fully accept your fate in case it pushes you to the point of giving up.

The reality is I don’t always look sick and try my hardest not to because who wants to look sick? I don’t want sympathy or pity, I try not to look sick so you treat me normally. So I can have a life without being riddled with guilt, about how sh*t me being in pain makes you feel.

Yes, guilt. I don’t know about other people in a similar position to me but I put on the ‘mask’ that means I don’t come across as constantly sick, because I am ALWAYS sick. I’m never pain free or full of energy. The only difference between my days, are how well I am coping and how much I can deal with, without you seeing the struggle. With this comes a lot of guilt, mainly about those close to me feeling helpless.

I never want anyone around me, to feel as frustrated as I do. Frustrated and helpless that there is no magic cure to make me better.

So Ironically, I put on the face to make sure those around me don’t suffer quite as much. So please if you know anyone in this sort of situation remember these few things:

• Try saying ‘you look nice today’ I know you mean well by telling me I don’t look sick but in turn it pushes me away – makes me feel like I have to prove that I’m not well or makes me scared to open up when I’m not coping,

• Odds are I am always going to be sick, I’ll just have good and bad days. But rather then feeling bad that you can’t help me – usually giving me the ‘look’ where I can see the sheer desperation that there’s nothing you can do… I know this because I see it in the mirror when I look at myself. The best thing you can do is just be there the same way you’ve always been pop the kettle on and just do us because the one thing we can do is carry on.

• Bear with me- I want to do as much as possible but I am limited, sometimes I might have to flake on plans as getting ready has wiped me out. It doesn’t mean I don’t want to do these things it’s just sometimes I can’t if you can adapt plans great if you can’t I totally understand! But please don’t make me feel bad by begging me because I’ve been begging myself to have the energy all night and I already feel awful.

• I know I drive you mad exhausting myself or pushing my limits. Unfortunately I know exactly what I am doing is stupid. But sometimes I have to make these deals with the devil. Getting advances on my energy supplies to feel ‘normal’ for a little while. Because sometimes the pain that follows after the fun is worth the sacrifice.

• When you say I don’t look sick – remember the harsh reality is that I’m usually pretending to be well. So when I say I’m tired, it’s not the usual kind of tired it’s more like I’ve been hit by a train my body can’t move kind of tired. So don’t take it personally if I’ve not replied to your texts or have gone into hiding I just need time to recharge my batteries as much as I can do.

• Please don’t make me feel like I have to justify myself and how ‘sick’ I am… think of the way you word things as I’m already at the stage of carrying paperwork to shut people up I haven’t met, to save me explaining why I need to use a disabled toilet – Please don’t make me feel like I have to do that with my friends and family too.

• Just because some days I may look good – it doesn’t instantly mean I feel good I’ve just become a master at looking calm and composed, the more understanding you are the more I will let you in.

• Try to think twice about the way you word certain things – remember were constantly exhausted which can make us a bit more prone to crying over things we are repeatedly told, you may mean well but there’s only so many times I can hear the same thing over and over until I crack.

Wording is key for example; if I’m tired and you say just push through it… I know you mean well and are trying for some tough love support as your out of things to say, but the odds are I’ve been pushing through it for a few days with no sleep and that’s why I’ve now burst into tears. I know it’s hard but ALWAYS think twice, and if you don’t know what to say, you don’t have to respond just listening is perfect.

Last but not least – please remember that as much as we may not cope too well at times, you’re allowed to find it hard too. We know it’s not an easy journey for us, but we know how hard it can be for those around us too. If you want to know something, ask. If you don’t know how to respond to what we’ve said, you don’t have too. As much as we don’t have the answers, we don’t expect you to have them either.

Just being there, listening to the rants, wiping away the tears and supporting us day in day out means the world. You shouldn’t feel pressured to have the answers or have a magic cure… because ironically, you are the closest to a cure we will find at present.

It’s a long and bumpy road but support and understanding is key. It’s the only medication you all have that helps us the most, without you even realising.

xx

 

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