Something we hear time and time again in the chronic illness community are stories of interactions with friends and relatives that end badly. Stories of broken friendships and family arguments because some people seem to be unable to understand and see the world through the eyes of another person in a situation that is so very different to their own. We know that it is impossible to comprehend exactly what living with chronic illness is unless you are living it but we appreciate the efforts of those who try, far more then we can ever say.
Living with Chronic Illness is tough, very tough – but it’s made unnecessarily tougher through the actions and words of others who do not understand. This is an open letter to them.
You may never read this and if you do read it you may still not understand – despite that, it is something I have to say.
I want to tell you that I try. I try harder than you will ever know, to keep going and keep doing the things I do. I try hard not to get stuck in a rut and bogged down by the sheer weight of difficult crap, tough decisions and incessant setbacks that get piled on me. You can never know exactly how hard I try because you don’t see it, but more importantly – you don’t ask me.
I want to tell you that I hope you never have to experience this first hand because nobody deserves to; would you choose this life if you had the option? Neither would I, but please don’t devalue the life I have by making choices for me. I have pushed through fatigue and pain and other forms of discomfort more times than I care to remember and I will do it again so I can spend time with people I care about, people like you, and do things I want to do. It is not up to you to deny me that choice. You need to ask me.
I want to tell you that you hurt me. Your words and your decision hurt me. You decided to leave me out because you thought including me would be too difficult. You decided to leave me out because you thought I would get in the way or slow you down. It is up to me to tell you if I think I will, not you to tell me. I am aware of my body and what it needs; I have insight into my illness, you don’t and you don’t need to. You need to let me have that choice.
I want to tell you that I try very hard to make my needs fit in with others’. I don’t enjoy putting people out if I need something or need to change plans but I would appreciate it if you would consider asking me before you plan things that I may not be able to do. I don’t ask for the moon; I ask for time and consideration – I need time to plan and to get organised, I may need time to rest and my capacity to do things my not be the same as yours but if you give me time and options I can often work something out. There are some things I cannot do, but there are many that I can. It’s not up to you to decide what I can and can not do; that is up to me but if you don’t include me in the planning I can not tell you. You need to ask me.
I want to tell you that when you see me out and about doing things and going places it is not without effort, planning and consequence. Sometimes plans have to change multiple times. Every happy, smiling photo hides something you can’t see, and why shouldn’t it? When I look back at them I don’t want to remember how tired I was, how the room was spinning or how much my head hurt – I want to remember the fun parts! The things I have to do to take care of myself so I can keep going are nothing to do with you; they don’t affect you at all and I don’t expect you to take care of me. You may see my illness, my inability to do some things and my need for particular plans etc as an inconvenience, something to ruin your plans. It is not personal in any way, you have no idea how truly inconvenient it is.
I need you to understand that I didn’t choose this life. I didn’t choose to spend so much time having to rest. I didn’t choose to be taking more medications a day than others take in a lifetime. I didn’t choose to have more specialists than you have siblings. I didn’t choose to be ‘complicated’ or ‘rare’. I didn’t choose to stop working and become dependant on the government for my income. I didn’t choose to change my life plan so many times. I didn’t choose a life that revolves around medication times, making sure I eat at the right time and the right food, making sure I get enough sleep and other seemingly endless sources of frustration. Don’t get me wrong, there is a lot about my life that I love, but I envy the freedom of choice that you have. I don’t have that. If I choose not to live my life in the carefully regulated manner that I do I would be worse off than I am now, in hospital more often and definitely more of an inconvenience. It’s not a choice, it’s not personal; it is necessary.
You discount me, you make choices that affect me and expect me to be able to go along with what you have decided without first asking whether it is ok for me or not. When I can’t, it’s my fault – I’m getting in the way and inconveniencing you, I’m not trying hard enough. You share posts on social media about illnesses you feel are worthy of your attention, you say ‘at least it’s not…(insert name of worthy illness here)’ but how are the people who suffer from these illnesses different to me? How is it that you can not see that I had no choice in becoming ill, just as the people you are ‘raising awareness for’ do not. Why do I miss out on your compassion and understanding when they do not? Please do not belittle what I go through.
I want to tell you that I know I’m not perfect and I don’t pretend to be; I’m not a saint or a martyr. Sometimes I make the wrong decisions, I say the wrong things, think differently to the way I used to and see the world differently. Sometimes I get stuck in my world or a cycle of pain or fatigue and it’s hard to see out of it but I do try. I also try not to talk about it too much because I know that talking about illness makes some people uncomfortable but it is a large part of my life and to have me you have that too.
I want to tell you that I understand and appreciate you; you may not think that I do, but I do. I understand that you often feel under-appreciated and taken advantage of. I understand that you feel that people don’t listen to you and don’t take you seriously, you feel misunderstood and you care about that; you pretend not to, but you do. I understand that you don’t like fuss, you don’t like having to change plans, you want things to be simple and the way you’d like them to be – but life isn’t like that, not for anyone.
I know you don’t understand what my life is like but that doesn’t give you the right to decide for me and it doesn’t excuse what you say. You know very little about my real life but you could do something about that.