I know, there are always going to be people who don’t understand.
Yesterday was a strange day. I woke up feeling relatively ‘okay’ – ie. I managed to get out of bed, wash, dress and make myself breakfast. I had some pain so took my pain meds and then somehow ended up like a zombie for the rest of the day, falling asleep constantly and even on the loo at one point. But that’s kind of besides the point. I don’t remember much about yesterday at all; what I do remember is that I had to face some ‘unhelpful’ comments in the morning, which I posted about on Twitter, receiving some amusing replies in return!
I am very lucky that most people in my life make a real effort to try and understand what life is like for me, but still there are one or two that I have trouble with and one is my future Father in Law. We get on fine for the most part, but he does not tolerate illness very well and has upset me with comments on numerous occasions. His favourite themes are that if I did more, or got out more I would feel better; that I need to ‘push past this’ and I’d feel better; that maybe it is something to do with feeling down, lacking in self-esteem or motivation and working on those things would make me feel better. I’m sure you’ve heard similar theories yourself.
Yesterday, I had told him that I was feeling better than a few (very bad) days ago, but not brilliant. In response came something like “Come on, where’s your positivity, you feel great – positive mental attitude woooh…” and then “If you opened up your mind to being a bit more positive, you might find yourself feeling much better!” There were a few suggestions on Twitter as to what I should have said/done at that point. I wanted to tell him that willing myself better with positive thinking would probably be as successful as him sitting on the sofa and willing himself to telelport to work – you might be able to visualize the result but the physicality of the situation doesn’t change…
But as much as I wanted to tell him where to go, I simply walked away.
Still, I was absolutely fuming. It hurts when somebody, who has seen some of the toughest trials I’ve had over the past few years, can be so insensitive and miss the point entirely. This is someone who had to carry me into hospital because I couldn’t even stand. Maybe they can see and sympathize with those instances but switch off when there is no quick and easy fix apparent? Maybe conditions like Still’s just take up too much of people’s sympathy and patience, meaning it switches off after a certain time span?
I know that people will never be able to see things from our point of view entirely, without becoming chronically ill themselves, but it would be nice to see some evidence of them trying to understand. Another idea that surfaced on Twitter was a futuristic gadget that allowed people to experience just what it felt like to be that person – their level of pain, fatigue, stiffness etc – all the things that it is hard to compare with even like-bodied people. I wonder what such people would have to say? Would it shock them into realising just how much we go through on a day-to-day basis? Years of the same pain and malaise; at a level you’d hope not to suffer over weeks, never mind for your entire future.
How many of your friends and family would agree to trying such a gadget? I know there are some who would jump at the chance to understand things better but others, I’m not so sure. And doctors – how useful would it be to show doctors how you were feeling without having to worry about getting it wrong and misleading them; without the fear that they may think you were exaggerating?
The funny thing with what was suggested to me yesterday, about being more positive, is that I’ve actually been accused of being too optimistic by other people. Some feel that I need to be more realistic about the severity of my illness, that I need to realise I may never get back the quality of life that I keep striving for. But as hard as things get sometimes, I’m still not willing to give up; therefore meaning that the person who suggested I get a ‘positive mental attitude’ doesn’t seem to know me very well.
That hurts too.
One of my main worries is that I’ll start to be identified or characterised by my illness – that people will only see the struggle, the bad days, the moaning, the things I can’t do, the places I can’t go, the events I can’t attend, the letdowns and no-shows, and they’ll be the only things associated with me. The only way this won’t happen is by surrounding myself with people who at least try to understand.
But what do you do if somebody doesn’t? Do you have a conversation; write a letter or do you leave it?
Let me know what you think,