Living with an invisible illness is like living in an invisible prison. No one can see the bars, the shackles, the chains and so they forget. They see you do the “normal” things that you’re capable of doing and then wonder why you can’t do the rest. Why you don’t do the rest. They think you choose not to do those things or that you’re not putting in enough effort. That if only you would try a bit harder then you’d realise you can do all of those normal things that are so natural for the healthy world to do. They don’t see the prison walls around you, the confines in which you live. They have no idea of the price you must pay or the pain you must go through to function. They try to cheer you up with encouragement and positive comments but these often just isolate you further as you realise just how little people understand about your imprisonment. They know little of the torture you endure as you battle your body, your mind, just to complete simple tasks that they don’t even think about. There’s so little comprehension of the hours spent worrying, planning, trying to appear as normal as possible – to function as best you can. You experience judgement, accusation, disbelief. You’re challenged, questioned, pushed, even interrogated and threatened. Then their frustration starts and turns into nasty comments and digs. You’re told you’re not trying hard enough, you don’t want it enough, you don’t put in enough effort, you’re too negative. You hear helpful suggestions like “think positive”, “smile more” and “if you believe you can do it then you will”. I grew up hearing this from all angles for year upon year and it caused me so much pain. Almost more pain than the condition I was trying to live with every day (ME). I couldn’t understand why people didn’t believe me, why they couldn’t see from my pasty complexion and dark circles under my eyes that I wasn’t well and that I needed to be listened to and understood, not pushed and made to “see sense”. These comments from so many sources have now caused me untold damage. From what my psychiatrist and numerous therapists over the years have told me, I now have secondary mental health conditions because I absorbed all of those comments – all of the misunderstanding and disbelief and turned it in on myself. I couldn’t comprehend how people that knew me so well could possibly think those things of me and be so wrong. The more people said it to me, the more I started questioning if I was mad, if they were right and I was making it up, enjoying it and seeking attention. Deep down, I knew I wasn’t, but when you’re 11 years old and countless adults and children around you are all accusing you of the same thing, you really start to believe it and question yourself.
Having illnesses that are invisible means that I’m entirely reliant on trust. You have to trust that I’m telling you the truth about my condition and I have to trust that you believe me. I can’t show you the exhaustion from the ME, the muscle pain, the headaches, the constant nausea. I can’t show you the difficulty I experience in dragging myself out of bed every day, when my depression constantly tells me there’s no point and that I’m worthless and useless and might as well be dead. I can’t show you the intestinal spasms that my IBS causes that make me wince and even double up in pain. You might think I’m being dramatic when my face contorts mid-conversation in response to the intense pain of what can only be described as feeling like my guts are wringing themselves out. But I’m not. I’m simply unable to hold up the “healthy” façade when there’s that much pain inside me.
Anxiety is invisible, it takes over like a parasite. It robs you of rationality and replaces it with constant worrying about ridiculous things that you know would never happen and yet still you can’t stop the obsessing going on in your head. Anxiety makes you fear everything. Things that were always fine and easy to do, suddenly become scary No one else can see or hear the terrifying voices in your head. They can’t hear the constant worrying, the constant stream of thoughts that you can’t do it and you can’t cope. They can’t see the effort you put in all day every day, just to get through 24 hours without a panic attack. Getting out of bed each day is a battle because in bed you’re safe, you can’t fail, you can’t let anyone down. But you also can’t achieve. You can’t succeed. You can’t thrive. You can’t effectively live. So you drag yourself out of bed and face the day and all of its challenges. You keep on top of your racing thoughts as much as you can and you force yourself to be productive and do things you need to do. But one small glitch, one badly worded email, one rejection for a review, one slight perceived criticism and the walls come crumbling down and you’re left trying to pick up the pieces. Again. You build yourself back up again, you plaster back together your already shattered self-esteem, you try to ignore it and not make it mean anything about you. You try to move on, to not mind, to not let it matter. You try to distract yourself knowing full well that most of the time when this happens, the whole day is ruined because you simply don’t have the energy that’s been sapped from holding it together all that time, to be able to stick yourself back together again. So you just count down the hours until you can go to bed and hope that will give you some respite and that tonight you won’t be plagued with nightmares or panic attacks and that tomorrow will be a better day. This fragility means you’re constantly at the mercy of anything negative that manages to seep its way into your life. When you have an anxiety disorder your resilience is almost non-existent. Things that you’d normally take in your stride, suddenly floor you. You get phased by everything. A simple request (when you’re well) becomes an unbelievably mammoth task that requires hours of questioning, wondering, planning and worrying. These are not things we choose to do, they’re the things that our anxious brain decides we must do, especially at night when we’re desperately trying to sleep.
I know I’m strong, I know I don’t feel it but experience tells me that I am, but that doesn’t make it any easier to get through the battles I fight every day to have even the slightest bit of normality. I don’t know how to “snap out of this”, if I did, I would have, a LONG time ago. But instead I have to muddle through each day trying to work out what works and what doesn’t, trying to deal with the fact that fluctuating conditions mean that my ability to do things changes on a daily, if not hourly, basis and just trying to keep up with that is exhausting. So many people seem to assume that once I’ve done something once, it’s easier, but the truth is that it’s not. I know that’s hard to hear, I know it isn’t convenient but it truthfully isn’t easier after the first time of doing something, often not even after the 5th or sometimes 10th. Just because I did something yesterday doesn’t mean that I can do it today. I may still be suffering from doing it yesterday or I may simply not be in a place mentally to do it again. Please realise, it’s not simply a case of putting my shoes on and walking out the door when I want to go out – the demons in my head fight back with a vengeance and more often than not they win.
Living with an illness that isn’t visible is a blessing and a curse. You can’t see I’m ill, or see that I’m suffering. I can hide it, act, pretend to be well. I can cover it up and look “normal” as if nothing is going on inside. But it means you can forget – you don’t realise I’m fighting, can’t see what my needs are and don’t notice when I deteriorate. You don’t see what I’m dealing with which makes this battle incredibly lonely and isolating. So next time you see me, or anyone else with an invisible illness, please realise that almost all of our energy is spent in an invisible battle and that despite what you might see or believe, we’re Fighting An Invisible Fight.