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.
*awkward pause*
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,
Laura’s Pen
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.
Hi Laura, love this piece. I could have written it myself! I’ve just spent the last few days using all my energy to appear ‘normal’ and have a good time at a friends wedding. I’m so exhausted now I could hardly feed myself.
I may have appeared well at the time (that’s what I was going for) but I’d spent the morning dealing with steatorrhoea, had back pain so bad I contemplated a lye-down on the bathroom floor, and my tinnitus was in full swing. Can’t wait to get home now – I’m running on fumes and may conk out at any minute!
Rachel xx
Thanks Rachel. Hope you had fun at the wedding, I’ve just attended one myself and it killed me for a week but was definitely worth it.
I mainly wrote this as I feel conflicted when I see people that I want people to understand how ill I am but I also hide how ill I am because it’s my night off thinking about it! It was kind of me saying to myself: it’s ok that you hide your illness, you don’t have to be an advocate 24/7, you’re a human being too!
Hope you get some decent rest at the payback doesn’t last too long X
Hi, I suffer with chronic and sometimes unbearable pain caused byou Spine and knee problems. I have not always been like this and it has changed my life completely. I find it so helpful knowing I am not alone , blogs like this are a godsend. Am sure that everyone else going through this knows how hard it is for your friends and family to understand what we go through on a daily basis. I am fealing increasingly isolated and my world shrinking. Have found like others on here that losing myself in Fantasy films and lately mindfulness colour art helpful. Hope you all get a peaceful day today ♡.
Reading this post was like reading about my own life – including the reading and scifi (though I’d have to add science fantasy to that, too).
I think the ‘but you don’t look ill’ thing is one of the worst side-effects I deal with – and I deal with a lot of them. It actually got so bad that, recently, when my Lupus was playing up, and giving me very redened cheeks, I was almost glad, as people actually asked if I was okay, as I looked so flushed!
When the ME & Fibro are bad, I look well, as I get colour in my face from the low-grade fever I’m forever battling whereas, before I got so ill, I used to have a redhead’s skin, which is naturally pale – the irony being that people often asked me, then, if I were feeling ill or faint, when I was actually feeling great! 🙁
It’s like fighting a losing battle at times, isn’t it? :/
Yes. Thank you for putting such eloquent words to it.
Yes, a hundred times… this!!
I love what you have written here. This could be my life, 100%. Perfectly written. Thank you!
Yes, I can so relate! I had chronic fatigue for years. After years of visits to numerous doctors, I was finally diagnosed with Parkinson’s when I was 55. Before that, I fought fatigue through trying to work ( mostly part time), being a busy mom and going back to school for my teaching credential later in life. I struggled through most days, keeping my little secret, especially from those outside my family because I wanted to be considered for employment. Having lived this way for more than 20 years, It was almost freeing to get a diagnosis, as I think even my family members thought at times my illness was all in my head. I would like to say to all that deal with chronic illness, be proud of yourselves. It takes a warrior to push on and keep going when you are bearing this cross! And take comfort that you are not alone. We are out there even if you can’t see us.
Thankyou for writing this post after 3 years and still no diagnosis, I have days where I feel like am banging my head against a wall with drs, etc…all I get told is my nervous system is seriously dysfunctioning!.. they won’t send me to neurology as they say there is nothing they can do even if they do send me there ??? Anyways that’s enough about me, posts like this help me to know I am not alone and to keep fighting for a diagnosis and to live as happy a life as possible, thankyou x
Oh jeez that’s a bad situation. Could you try another GP? Ridiculous that they think it’s ok to just leave you like that!
Laura, thanks for this post, it really is excellent. I plan to share it in my blog in September giving credit to you. I relate to much of what you say.
Thanks so much for writing this. It captures exactly what I struggle with.
Thanks for writing this. I get it ALL THE TIME. And it’s really quite taxing constantly explaining yourseld.
Great article. I dread the whole ‘ so what do you do’ question and have never found a way to answer this without mentioning that I am ill which is personal and not something I want to tell a relative stranger.
This is so exactly my experience it’s like you are a fly on my wall. Thanks for sharing.
Ditto other comments Laura – you speak for me too. Wonderful piece – thank you 😁
Laura, Thank You!! You have taken the words out of my mouth. The makeup, I love playing with makeup and hair and nails. But I have osteoarthritis in neck, back and knees. PTSD, Depression and anxiety, headaches, chronic pain, feet pain from peripheral. My husband finally understands and helps me emotionally and provide s and protects me. I love going with him, but I suffer in silence a lot of times, because I miss him and he misses me. And I suffer in silence to spend or help my girlfriend. I love getting myself ready, wearing makeup, lipstick, regular clothes, instead of my pretty little nighties, being able to get out of the house instead of in my nice comfortable bed. I have read a couple of your articles, again Thank you for taking your words out of my mouth.💞
This is a great post. I was once at an engagement dinner for my daughters friend. Sitting next to a lady we got chatting. Eventually after long conversations she asked me “What do you do for work” I said “I don’t work due to being chronically ill, I am on disability.” She did a half smile then turned away and didn’t talk to me again. I got up and left the celebration with the excuse I had to get public transport home and didn’t want to miss my train. (In hindsight that was good as there were no trams and I had to end up getting a taxi to the train) Since then I am very careful who I tell. I have even had “friends” (no longer by the way) in the chronic illness community who have been nasty to me and questioned my ability to travel.
this is spot on. you have explained what i go through perfectly. i struggle with how much and what to tell family and friends. i so much enjoyed this post. you write so well!
Summons up the struggle perfectly.