When people think of chronic illness, everyone thinks of the big things, the pain, the disabilities and so on. We cease to be everyday people, somehow we have become almost lepers, unclean & unrecognised. Some find us to hard to face, as we make them feel inadequate. Others are embarrassed and feel guilty about their own healthiness, and others still, are simply scared, as they see in us a possible future, one they don’t want to believe could exist. If our lives weren’t tough enough just dealing with what our health throws at us, we have to spend our time trying to work out which it is, and how to put them at ease. I know that a lot of people would say, “Why bother, if they can’t accept you just as you are, it’s their problem, not yours.” Personally, that just doesn’t work for me, I have always believed that other people do matter, even the ones that I will never see again, or even ever see at all, if they are somehow aware of me, they matter. I’ve never been worried about what they think of me directly, but what they think of people, like me. It doesn’t matter if it has been my appearance or my lifestyle, I have tried to live as an ambassador, a changer of minds and opinions. If I can make one person think, even for a second, then I have put enough into their minds, that will mean whether they intend to or not, they will think about it. Hence, here I am, still plugging away, still trying to open eyes and make people think.
To some extent, I can understand some of the reactions people have to other people, especially the chronically ill. A lot of the time, I honestly believe the problem is simply that at first glance, the majority of us don’t look ill. We’re not pale, with sunken eyes and our bodies, aren’t wasted to a shadow, but that isn’t an excuse to some of the reactions I have had in the past. If there was one thing that I would recommend to anyone who is ill, it is to get yourself a prop. When you spend much of your life in pain or suffer badly from fatigue, which as we know, can hit us out of the blue, if you look totally normal, no one will give you that seat on the bus, that you, badly need. It might feel wrong, or even deceitful on your good days, but a walking stick, can totally change your life. If that seems to bulky, or a nuisance to carry when you don’t have to, well there is one that you can keep in your bag, a medical sling. At first thought, why would someone give you their seat if you’re wearing a sling? Well, it takes a little acting skill, but if you wince several times as the bus swings around corners, look a little unsteady, and even show pain if someone touches you, a seat will appear. I know, because, I was guilty of using that one, long before I was diagnosed and I was having what I now know were flares. The guilt would get to me at times, but it was better than collapsing from fatigue in the middle of the bus. Whatever prop you choose, just remember it has to be visible and credible, just wearing a wrist brace alone, won’t work.
Once I was diagnosed, I didn’t shy away from even telling total strangers if I needed help. For the first couple of years, I still took the bus to and from work daily, and there were times when I would quite bluntly ask for a seat, especially on the way home. I was always polite and I always spoke loud enough so that if, the person I spoke to was reluctant, they were embarrassed into standing. If that failed, someone close by would offer me, theirs. On the whole, people I spoke to were usually helpful. It was the looks from those walking down the street when I staggered or stumbled, that I found hard to deal with. At those moments, I use to wish there was an angle triggered sign, that could just pop us above my head, saying “I’m not drunk, I’m ill”. Life shouldn’t be like that, we shouldn’t be made to feel that way, but I never found an answer for it, until I gave in, and started carrying a stick everywhere that I went. The majority of people in this world change totally once you have that stick. There are still some who try to pretend you’re not there, or that they haven’t noticed the stick, try as I might, I never fully found the answer for them. Lack of knowledge is treatable, ignorance, isn’t, unless, you want to spend a lifetime reeducating them.
I remember, a very long time ago now, going to London with my children. They were very young and I thought it best to have them for safety reasons, in a double buggy. We were walking through a big store on Oxford Street, when my sister who was with me, overheard someone say, in a very snooty voice, “They shouldn’t allow those things in here”. I never heard anyone say it, but I saw, that exact phrase, on the faces of some people when I was out in my wheelchair. I did here, tut’s and huff’s, when I was blocking a narrow isle, or I got caught up on a trolly with wheels no more accurate than mine. I know people get frustrated by many things, if I had heard the person in London, I would have stopped them and engaged them in conversation as to where my children should be, and would they want to pay for their care for me. When it comes to wheelchairs, well I have always been firmly of the belief, that town planners, shop fitters, and designers, should all be forced to spend two days, strapped in a chair. I don’t have the slightest doubt that if they were, our cities would look very different. In some ways, I don’t think that it would be a wasted exercise if everyone was put through that ordeal, understanding would grow rapidly. Neither, are going to happen, so it is down once again to us, to educate every single person, whenever the opportunity appears.
A wheelchair, or a walking stick, isn’t giving in, if anything, it is a badge of honour. No one gives out medals to the ill, but I have met many who deserve one, people who have been through so much more than I ever have. I now understand what it takes to be given one, as they aren’t just handed out because you have a little bit of pain, they are handed out to some of the strongest people alive. Those who treat us like lepers have much to learn, but I hope they never have to learn it first hand. There are no hard and fast rules when it comes to dealing with any individual. Some will always hold fast to their blinkers and refuse to show empathy for a single living being. They are the people I feel sorry for the most. They are the ones that I more than anything, would like to be able to reach, as they are wasting so much of their lives, being anything anywhere near human. Everyone with chronic illness will lose friends, but there is no truer saying than “when the chips are down, then you know who your true friends are”. That though isn’t the only reason they go. It’s a complex mix of things, some have nothing to do with health, just life. What I don’t believe, is that they can’t stand to watch us suffer, that is total rubbish. Firstly true friends don’t think that way, they see us, not our health, but more than that, friends love each other and love, just doesn’t work that way. It shouldn’t be through lack of understanding either, as we are the greatest teachers about what is happening to us, so they should understand. People just simply come and go from each other’s lives, the problem we have is the normal replacement system, doesn’t work, we’re not out there as we once were, to find the replacements. We don’t have the energy to use that it takes to build a friendship, our lives have changed and world hasn’t.
It is up to us, to decide how we deal with others. I will never stop trying to spread the simple missed fact, that we’re still human. We have the same needs, same feelings, and the same requirements, of every single person that sees us, even the ones that only see us out of the corner of their eyes, as we ever did. If the world is ever going to be a better place for those to follow us, it’s up to us. People won’t change unless we do the work to change them, and that could totally change the lives of so many to come.
Please read my blog from 2 years ago today – 16/12/2013 – Leave me alone
One of the comments left for my yesterday mentioned something I have often wondered if it is attached to my MS although it was left by someone who has Fibro, something else I also have. She referred to not being…..
So very familiar, Pamela. I have and do use all those strategies but it bugs me that we have to do so, that we have to exaggerate symptoms so people can see. I’ve never forgotten an incident in the 80s (stop me if I’ve told you this before!) when I asked for a seat on the underground because my feet were giving me such pain (I’d been diagnosed but nothing was obvious). The man was probably in his 40s. ‘Can’t you ask someone younger?’ he spat out. At this point, a smiling man who was older stood up and offered me his seat. It turned out that the man who had refused got off at the same stop. Not limping (as I always tried to do) was not going to work for this **** so I exaggerated the limp. I confess that the satisfaction I felt when he saw me limp and rushed up to me with profuse apologies, was brilliant. He offered me a lift in his car to my home. I politely refused. ‘Next time,’ I said, ‘think before you judge.’
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Well done you, I bet that stayed in his mind for a long time to come, but it’s so wrong that we feel forced to go that far! Education is the only answer, but it’s a long slow road. May be there will be a day when you don’t need to look half dead, for people to actually begin to see us as genuinely in need, not at it. (((Hugs)))
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I hope it did! Maybe one day we won’t have to do this but I suspect it won’t be during our lifetime. In the meantime, we just have to keep spreading the word. xx
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In the peak period of flares, I have been afraid of not crossing the zebra crossing in time and would take my walking stick (I used it at home mostly to pull myself up) along because I didn’t want the horns blaring at me angrily. Buses, I have not managed to gather the courage to ask people- even when I was pregnant and my muscular weakness was so severe (along with many other problems) that I could barely walk, no one would offer me a seat. I sometimes wonder when I am sitting in the bus, if there is another person around with invisible pain or disability and wondering about the “normal and healthy” me sitting while they are standing in pain. Just like no one knows what I am going through, I too have no way of recognizing another person like me.
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