Thank you to the two people who left comments yesterday, they both quite beautifully illustrated just how strong that feeling of guilt is, whether totally created by ourselves or fed by others. As I said yesterday it is one thing that no matter how much we try to apply logic to our situations, or we are loved, guilt just sits there laughing and taunting us because it know it’s stronger than possibly even love, even unconditional love. I know I am so lucky to have such a love but it doesn’t stand a chance against it, even though as I said yesterday, it isn’t our fault, I suppose it isn’t equally our fault that we feel guilty, it’s just the way it is and probably always will be.
Illness is an emotional roller coaster, not just because of what is happening to us, but also because of the way we are treated by others. My MS was undiagnosed for nearly 20 years, it only found a name when it stepped up to PRMS but the years leading up to that and the first few years post diagnosis were made so much harder than they should have been, by people. Mainly strangers, but even those who knew me had an air around them of gossip and disbelief that there was really something wrong as I look fine. To be honest even today if I were sat supported by cushions and I was just talking to you, most would think that I have nothing worse than a bad stutter and on a bad day, a poor memory, on a really bad day they would just think I was a totally moron, but I feel like agreeing with them on those days. I know to this very day I can with preparation manage anything up to two hours, possibly a little more, without having to call it a day and disappear. By taking a booster tablet, adding some make-up and settling myself so that my spine doesn’t twitch, to those who don’t know what to look for I am fine, some doctors see right through it as did the one who did my scan last year, I had only been in his room seconds before he asked if I had MS, but then that’s his job.
I lost count of the times since my early 20’s that I have said to someone that I really don’t feel well, to have them say to me, that I look all right to them, or I have heard the all too familiar tutting from strangers when I loose my balance or am unable to walk in a straight line. Trust me when you have an invisible illness it becomes just part of your everyday life, one of the pluses of being housebound is that I have now escaped all of it. People don’t think about how stranger feels when they pass comment incorrectly, being treated like a drunk or a somehow lesser being, can cut straight into your heart, especially if it happens when you are already feeling like death warmed up and are desperately trying to get home and to rest. I have tried so many times to work out why some people think they have a right to judge others based on a split second? I have thanks to the fact I have an outrageous streak been used to getting reaction out of people just by the way I dressed or looked, but that is so different, there is an expectation there that some will gear and other applauded, but to be dressed in a business suit and one of the masses, to suddenly because you loose your balance, your treated like the lowest of the low, well there is no comparison. It doesn’t matter who you are, if you suddenly hit the ground, you need help, tramp or princess the need is the same. I believe that being both outrageous and outspoken made the times complete strangers shredded my emotions easier to deal with, I had the one liner that turned their words and cut back at them as fast as they did at me, that brought others to my aid with looks that put the “tutter” or the body swerves, in their place, but I was still left hurting inside.
I have lost count over my months of writing how many time I have said that there is a huge need for the education of individuals, from little Joey to the CEO of the NHS on how people with visible or invisible conditions, should be treated. The more I think about it, I think I would actually go much further, I hate to say it, but almost the entire world population needs to learn how to treat other humans as human. In my lifetime I have stepped downwards health wise from just like everyone else, to walking with a stick, living in a wheelchair and now housebound, only has the last of them found me truly been treated as I believe a human should be, but that’s probably because the only people I see now, are those who love me.
Strangers are hard enough and their words painful enough but when you hear it from those who should know better, well that cuts even deeper. I was in full-time employment when my PRMS became clear for anyone to see and I made no secret of what was wrong with me, I explained it to not just my employers, but to my employees and anyone else who wanted to know, but it didn’t stop the odd occasions of being shredded and worse still the clear to everyone situation when they tried to force me out of my job, but failed so spectacularly. There may be plenty of laws out there that say quite clearly that we as disabled people can not be abused in any way. No one has ever physically abused me due to my health, but I have lost count of the times that I have been abused verbally, that I have been cut into and left feeling like I am some subspecies not worthy of being treated as human. The law can’t protect anyone from that, our courtrooms would be filled daily over and over again if we all took the law to its ultimate conclusion. It is so wrong that at a time when we have enough to deal with, that on top of that we have to grow a thick skin and turn the other cheek again and again.
Recently there has been a drive for people to be sent on courses by their employers on being Dementia friendly, I fear that it is merely a tiny scratch on the surface of a much bigger problem. I hope that the momentum isn’t lost and that it is just the start, as there is a need for everyone to learn not just how to help those with a recognisable condition and how to take time and be patient with them, there is a real need much greater than that and that is for everyone to learn how to be people friendly.
Please read my blog from 2 years ago today – 8/10/12 – Flare Danger
I didn’t tell Adam before he went to work this morning but I am really struggling today. There is always the danger that when something else is wrong, that MS goes into a flare, I am not sure if that is what is happening yet as it takes time to know. Flares always heighten some existing symptom on top of just being ill. The problem with having another illness or just a bug is of course…..