This is an issue I’ve wanted to write about for a while now, but due to circumstances on my end I’ve been unable to either find the time to do it, been in no headspace to write about it or haven’t physically been capable of doing it. I’m hoping that taking the time out tonight to sit down and get this out of my head will mean my brain will stop charging through at a million miles an hour.
Over the last few weeks, I’ve been party to a handful of events that got me thinking. Some were good and some were bad, but they all ended up at the same two destinations in my head – the idea of selective exposure, and when helping isn’t really helping.
Most of the time when people see me, it’s usually within certain parameters. Somewhere between the “I’m feeling great” end of the scale and “I’m not feeling awesome” end. Anything beyond that and I usually rule out any form of social contact for a number of reasons. Have you ever tried to sit through a conversation and remain polite and chatty while someone’s trying to rip your toenail off? How about trying to have genuine interest in what someone says while you’re exhausted enough to actually fall over out of your chair? There’s only so far I can fulfill my social obligations on a day when I’m in above-average pain, my fatigue is playing up, or any other number of fuckery my body likes to pull.
What this basically means is that when YOU see me having a bad day, that may not necessarily be the same as MY bad day. That’s not to invalidate anything I’m feeling at the time, but my sliding scale for social activity stops at “Fucking ow”, but my whole scale goes all the way past that up to “Oh God Why?”
The bit that really frustrates me about this issue is that so many people seemed to assume that what I felt stopped at what they saw. Like, when they didn’t see me using the cane or with a visible limp, clearly I was in no pain at all, and when I did have the cane, I was still obviously okay because I was still up and talking.
I’ve had to explain to several people, some friends, some family and some other random people on the street that, when you see me out and about, when we come over for games or when I go out to get lunch, it’s a very controlled thing. I MUST be within point X and Y in order to function as a semi-competent human being and any deviation from that usually means I’m suck at home and in bed, in a world of pain. What you see is NOT what you get with me, but that doesn’t seem to stop some people thinking I’m leading them on or I’m some kind of liar.
That’s the problem with these invisible illnesses. They’re kind of just that. You don’t see them. You see reactions from them. You see the implications of them running amok in people’s bodies, but it’s not like we turn purple or grow horns. You basically have to take our word for it and actually believe us when we say we’re not well.
And now on to my next point. When helping isn’t really helping.
One of the things I’ve been struggling with over the last few months – longer, in fact. Just about as long as I’ve been sick, to be honest – is the idea of wanting to help. For the most part I try to be gracious about the whole thing and thank people where I can for stepping in. However, there are other times when people overstep boundaries in eagerness to help the cripple or, assist the female or even lend a hand to the friend.
First and foremost, there are two different kinds of help I want to identify, and there aren’t always defined boundaries between the two.
The first is helping because they need help. This is usually the case easiest identified by the audible “Can I have some help, please”. All sarcasm aside, it’s fairly easy to see when someone’s struggling with something and you want to step in and lend a hand. It could be a case of them needing help getting up the stairs, or opening a jar, or changing a light globe, remembering a birthday or even recalling what they walked into the kitchen for. There’s usually some kind of body language on the part of the helpee and an acknowledgement of some kind on the part of the helper.
The second kind is a little different. This involves helping because you THINK they need help. This one can be done for different reasons. Sometimes because the helper wants some kind of feeling of gratification for “doing what is right”, sometimes it’s because they think that the person they’re helping is a lot less capable than they really are and sometimes it’s genuinely out of desire to assist another human being.
Now, the problem with the second kind of help is that it’s not always called for. I had an incident with a friend the other day (which we talked through and we’re back to normal again) but it made me think about the other times where I’ve had similar situations and what all my experiences combined have taught me. People have assumed I have needed help and have gone out of their way to do this, without actually asking me if I needed the help first.
Unfortunately this division can be really hard to navigate for some people and toes end up getting stepped on.
One of the issues I find most frustrating is that we’re taught straight off the bat to assist those less able than us. In my situation I can be either more or less able in a lot of areas on any given day, so I’ve found people wanting to go out of their way to make life ‘easy’ for me without taking into account my choice on the matter, while other people that obviously require some help are left to fend for themselves. One thing that a lot of people seem to forget, though, is that (for all my cripple-ness) I’m a highly independent individual and take fierce pride in my ability to self-manage. The beautiful humour in that being that, on my bad days, I need help to dress, shower, use the bathroom, etc.
What this means, however, is that I usually don’t want help until I directly ask for it. I’m no stranger to asking for help, even if I can be a little sheepish about it at times, but when you’re stuck in body that takes a toss at a dart board to decide what you can and can’t do on any given day, you treasure those things that you can still do on your own, without help of any kind. You’re fierce about those things. You don’t want help pushed upon you because someone else thinks you need to be helped. You want to do it yourself because you’ll be damned if you can’t wash your own hair, or dress yourself today, or even go for a walk.
When someone comes along and helps you out with things they think you need help with, it crosses a line where they start robbing you of that independence. Suddenly, you’re no longer strong and capable in that area because someone else has just come along and done it for you. You’ve had the rug pulled out from underneath you and yet we’re still taught that we should say thank you because this other person only had our best in mind.
The problem is that when you live a life where independence is such a flippant and fleeting thing, rather than being preemptive help, sometimes you’re robbing that person of part of their identity. Part of who they are. That last part of the strong, capable person they were before they got sick, and that’s where things go wrong. That’s where frustrations break and feelings get hurt and it’s incredibly hard to explain a concept like this to someone who’s never known dependence on another individual. It’s hard to explain how something so well-meaning can have such a vastly opposite effect on an individual’s life. Sometimes helping really isn’t helping at all.
Far be it from me to discourage assistance when required, perhaps first ask if your person would like help with what they’re doing. If it’s not a routine you’re used to or they haven’t asked themselves, perhaps ask them if they want assistance before you jump ahead, and don’t be offended if they say no. It’s not said to reject the support you offer at all, but instead is perhaps their way of maintaining some form of normalcy over an otherwise abnormal life. Furthermore, it’s always far easier to ask first than to have a negative reaction to your good deed.