Laura’s Pen’s open letter to people who say: “But you don’t look sick,”, explaining why she hides her illness…
Dear friend/ acquaintance/ person I’ve just met
If you’ve ever seen me and thought to yourself “she doesn’t seem/look that ill.”, then this is for you. I’m not going to have a go at you, I just want to explain something to you. In fact, I don’t blame you for the thought crossing your mind (as long as it wasn’t followed up by disbelief in my illness).
There’s a reason I don’t look/seem as ill as I am when most people see me, and that is that I’m hiding my illness. What I need you to understand is what you are seeing is not the norm. It is not what you would see if you dropped in on me unexpectedly. And the short time you see me acting normal takes many days of increased pain, fatigue and cognition problems to get back to my normal, and my normal has pretty high levels of those things already.
I write this blog so people can understand my illness a little better, so it may seem counterintuitive for me to hide it on one of the few opportunities I have to show people my illness, but stick with me here, while I explain why I hide my illness.
1. It’s nice to feel normal once in a while
I spend 99% of my days in exactly the same way. I have a very repetitive routine in place to manage my symptoms as best I can. My makeup only comes out once a month at best, usually less than this. I have far more nice outfits than I get the opportunity to wear. It’s nice to dress up and pretend I’m normal for a while. It gives me a huge mental boost, if only temporarily (sometimes I can feel quite mournful for my old life the next day when my illness has taken over my every breath). These moments are what I live for, I don’t want to give them up for the sake of someone else.
2. I don’t like to think about how hard my life is
When I meet people for the first time, the conversation normally goes like this:
You: So, what do you do?
Me: unfortunately, I can’t work due to health problems.
Me: But I am very slowly writing a book
You: Oh! How interesting! What’s it about?
It’s taken me years to figure out how to insert the fact I can’t work due to my health into there in a way I’m comfortable with. This is what I came up with, I basically very vaguely and quickly slip it in there, then give us both an out to talk about something else.
I know this gives a false impression of how much I actually can and do write but, to be honest with you, I don’t want to be the downer at the party, I don’t want to be the awkward conversation you look for an excuse to leave. I don’t actually want to talk about what is actually the hardest thing in my life during one of my few moments of fun. I want to talk about normal things and forget, if only for a moment. Think about it, if someone you knew just died and you decided to go on a night out to take your mind off it, you’d expect a few people to ask how you were doing, but you wouldn’t want to spend all night talking about it.
3. I cry when I talk about emotional issues. My illness makes this worse.
If you are a friend, I may tell you how I’m actually doing if you ask. But what I will do first is pause and decide how likely I am to burst into tears if I talk about it. If the thought of answering truthfully makes my face start to flush, I give a fake answer. One of my best mates asked me how I was doing once, in a tone that revealed he wanted an honest answer, it wasn’t just a pleasantry, but at that moment I couldn’t cope with the truth, so I said “yeah, okay” and changed the subject.
At other times I’ve given honest answers. But I’ve found myself talking in a very detached way. I talk about facts not feelings. Because I know once I crack I’m going to be a blubbering mess. You may worry that I’m depressed because of this. Actually, I’m not. I have been but I got help with it and now I do get pleasure from my life. The problem is when I’m out I’m using more energy than I have, I’m running on adrenaline. Anyone whose ever gone without much sleep several nights in a row will know, when you have no energy left the slightest thing can set off an emotional outburst.
Plus there’s the fact that my face goes bright red when a I cry and remains blotchy for several hours afterwards, so crying for a few minutes means I basically have to wear a big sign saying “I’ve just been crying” for the rest of the night, which isn’t really what I want.
4. There’s more to me than my illness
In this sense, having chronic illness is much like becoming a parent. It suddenly comes along and takes over your life. A huge part of your life is dictated by it. You read articles about it. You become your own expert in it. You spend nearly every second of the day living it. And because of that you will naturally talk about it. And your friends might get annoyed at how much you talk about it (rightly or wrongly). The primary reason I made a Facebook page for my blog was so I could cut down on how much I post about ME on my personal FB page and just direct it at those who were interested. But you’re still the same person you were. The same things still interest you. You can still have other things to offer to those not in the same position.
There is more to me than my illness. I love a bad joke. I love reading. In fact, I love reading more now I’m ill as it gives me an escape. I lose myself in other worlds, in other people, in able bodies. I love talking about books, particularly sci fi. Just talking about it here has given me a little boost of enthusiasm. And while I will talk about my illness a lot on social media where people can take it or leave it, when I’m out socially and trying to forget about my illness for a few hours I have so many other things to offer.
So I hope, that perhaps next time you see me or someone else and you can’t quite figure out how what you see in front of you fits in with how ill they are meant to be, please remember that what you see in that hour or two is not a true depiction of their lives. Chronic illness is not always obvious and can be further hidden by makeup and behaviour. If someone is lucky enough to be able to occasionally go out and meet people (many are confined to their homes or beds) then it’s quite likely they want to forget about their illness for a bit. Don’t judge them by what you see, it is just an illusion.
Lots of love,
P.s. Not everyone with a chronic illness is like me *cue Monty Python quote*” We’re all individual’s.” So some people won’t hide it like I do. Please don’t judge them either, as I said, it is a huge part of their lives.