Chris sent me a link today to this internet open letter and it made me think. I generally don’t like letters like these. Not to sound mean, but they’re usually filled with bad language, overbearing sentiment and logical fallacies. Life is never as black and white and understanding is not an on/off switch.
It did make me think about how it seems to always be about raising awareness for people (like me) with whatever issue and rarely for loved ones in the shadows, also affected, also grieving for what they’ve lost, also challenged by the impact of our health problems on their lives.
My perspective may be a little off, but it’s not so much about being sick or healthy, disabled or able-bodied, its all a matter of degrees. I know someone with mild Rheumatoid Arthritis and I’ve known someone with severe Rheumatoid Arthritis and although both have a chronic illness, one lived very much a normal, happy life whilst the other was registered disabled. It’s not that simple a distinction to make. (And on a whole other note, chronic illness isn’t the only challenge life my throw at us – there are many things that affect people in many different ways, this one just happen to be particularly close to my heart due to my own struggle with health issues).
There is a spectrum and there may be a line and although the middle is gray, there are people who view themselves as pretty healthy (even though they may have a chronic illness) and others who can’t. I think the divide lies more between how we view ourselves and less on what labels we may have collected.
Letters like these mean well. They are written by people who mean well, but it struck me that they always seem to be about the people who are the exception rather than the rule and raising awareness is great, but there is a flip side to the coin. Dealing with disability is not just about people without a disability/serious illness treating people with disabilities/illness with understanding, it’s also about people who have had a disability/illness for a long time/their whole lives understanding people who aren’t affected by health issues on a daily basis.
As someone who has a genetic condition that are often debilitating and severe, I want people to understand me and how my health affects me, my life and the decisions I make. Sometimes though, I think it’s me that needs to be a little more understanding and a little less demanding. So it made me think about rewriting the letter for all my friends and family who often work so hard to understand me and my laundry list of health issues. I think they deserve a letter too and for them I think it might look a little more like this:
Please understand that not being sick/disabled doesn’t mean I don’t have the capacity to understand or listen. I’ll never know exactly what it’s like for you, but I can understand enough if only you explained things a little more. Our lives are very different and I make assumptions about that I don’t know and those are based on my reality, not yours. Please understand that I mean well even when I get the facts wrong.
Please understand that I cannot keep up with your rapid change of pace, mood and needs. I try be accommodating by learning from past experience and so when I am perplexed as to why you could walk yesterday and today you have issues sitting up, don’t take it personally. My capacity doesn’t change much. I can do pretty much the same things every day and it’s difficult to understand that you cannot.
Please understand that I will get things wrong. Some days independence is important to you and helpful gestures are not acceptable. Some days you don’t have the luxury or doing it yourself and when I then do not offer to help, you seem upset. I don’t know what you need unless you tell me as your needs can change on a minute to minute basis and it’s not always obvious.
Please understand that getting out and doing things does make me feel better. I don’t suggest that it’s the next miracle cure, but when you are bedridden/housebound, I really do think that getting out can lift your spirits. And whilst your illness is not caused by depression, it’s easier to see the light at the end of the tunnel when you’re not sick/disabled as well as depressed. I may suggest the wrong thing to do, but even just sitting in the garden can lift my spirits when I have had a difficult day and I think it can do the same for you.
Please understand that most of the time when I say ‘now’, I really mean with in the next while. And sometimes you do too. I don’t know the difference between delaying for an hour to take one type of medication, but needing to take another this very minute. I don’t understand why some days you can stand up and wobble and when I say ‘sit down’, you say, I will, just want to finish pouring my coffee and on other days, one second you’re standing and then you’re sliding down against the kitchen cupboard, sitting on the floor, cradling your head.
Please understand that life is rarely critically urgent for me. It’s not as if I’m going to die if I don’t do x within the next minute. I forget that you could. I forget that very small actions have massive complications for you sometimes and that you can’t put it off even though you often want to. It’s difficult to understand that you can seem fine one minute and then need to go immediately. Usually there is no time for you to explain and it leaves me somewhat in the dark.
Please understand that I hate being sick. I am miserable when I have the flu for a week and can’t function properly. Being sick is not normal for me. I get grumpy, frustrated and have to adapt my life completely to accommodate it. I have responsibilities and commitments that I cannot tend to when I am unwell and so getting better is a high priority for me. I’ll happily try anything and everything on the off-chance that it may help, even just a little. I will always instinctively try to help you do the same.
Please understand that when I make suggestions, I only have your best interests at heart. I know that you have an incurable condition, but maybe there is something somewhere that makes you feel better. I remember what a difference the heat pack I gave you for Christmas made. Every little bit helps and I know you don’t always have the time and energy to look into things and so I do that and bring you thing that I come across on the off-chance that you haven’ tried it and maybe it could make your life a little easier. It’s hurtful when you don’t even bother looking or listening.
Please understand that I cannot feel or see your pain. I don’t know how you are today unless I ask. I don’t know what you can do today unless I ask. I don’t know if you need my help unless I ask. Don’t get angry because I ask so many questions that make it seem as if I don’t understand. I do my best with the information that I have, but I usually need more.
Please understand that I cannot know everything about every health condition and disability. Disability/chronic illness comes in so many shapes and sizes and I try to keep up by comparing the people I know that are affected, it’s a small help as there seems to be more differences than similarities, but it’s the only way I have to try and understand what your life is like.
Please understand that I am not perfect. I have good days and bad days too. I have problems at work, financial worries about the future, a full-time job, a family to take care of, sick relatives to visit and friendship can be quite time-consuming. I may not be experience the pain that you are, but you haven’t experienced the day I’ve just had. Being healthy does not solve all the world’s problems and it certainly does not mean my life is easy.
Please understand that I can’t help being well. Don’t look at me with envy when I put on my trainers to go for a run or resentment when I bustle about the kitchen, sipping a glass of wine whilst singing along to the radio as I cook dinner. Don’t make me feel guilty for being able to do the things you cannot do.