Sometimes, it is good to stop, to take a little time to look at yourself, through the eyes of others. It is something I have tried to do throughout my life, but I think, I have reached the point, where I really have to stop doing it. It wouldn’t be a problem if the world understood what living with a chronic illness really means. Today is a perfect example. Today is pancake day, that means I have to spend a large part of it, making my Psyllium pancakes, essential to keeping my internal systems working. I have laid out before the work that it takes, the time that it takes and just how exhausting the whole process is to me. Trust me, this is probably the day in my current life, that has to be carried out frequently, that I hate. Through the eyes of others, it is one of those so what situations, yes, it takes a little time, and some work but anyone can do it, just get on with it. Through their eyes, I am just being lazy. That is the problem when you live with an invisible illness. It quite honestly doesn’t matter which one, if your illness doesn’t have you looking ill, drawn and haggard, then there is nothing wrong.
Even right now, if I let someone, which I normally don’t, to take a photo of me, apart from the wheelchair, I look fine. The fact that I can produce a daily blog, send out tweets and still be part of the world, just all adds up in the eyes of some, to my not being ill. Yes, I can see that. I can see it with ease and it worries me. It wouldn’t have worried me 30, 40 years ago, then it didn’t matter how you looked, if you were signed off by a doctor, who said you were not fit to work, the majority of people accepted it. There were a handful, as there always are, who would look at you quizzically, but they were the minority. What happened to this world, what changed in this world that means being ill, seriously ill, diagnosed with conditions that are killing you, that the majority now will question it? Worse still, our UK government even now question it. I clearly started questioning it a long time ago, as you will have seen from the picture I placed at the top of my introduction post, but something has changed out there, something has made the general public cynical about the whole subject of ill health.
Clearly, I don’t know what the situation is outside the UK, and my thoughts are being formed by what I see on the TV. What is coming across from the news, documentaries and other programs is a perception that we are all at it, we’re scammers who deserve to have our benefits taken from us, and that we should get off our backsides, and find a job. For that, I do to some extent blame our UK government. Their stance and treatment of the chronically ill is shameful. If a doctor has said this or that is wrong with a person, no one has the right, to question that fact and declare them fit for work. But I am not here to shout about politics, as I said, I see that as a factor, but that’s all. I actually think that the real problem is once again down to the media. I mentioned the other day that I was sat listening to a show on health. It was discussing all sort of things, from diet to genetics, it is the type of show that I watch frequently. I think that they are a large part of the issue, as they give the impression, that the majority of illnesses are now curable. Along with the amount of research, that is being declared almost daily as the new miracle cure, the impression is being fed to the masses that once again, the medical world has the answer for everything.
If you are a person, like the majority, who has had nothing to do with anyone with a chronic illness, other than those of old age, that Granny or Grandpa had, I can see where this impression is coming from. 40 years ago, no one heard any of the things that are now discussed freely on the TV. All they heard was what the individual told them, and people were more trusting. If someone said “I have MS”, they only thing they might ask, is “What is that?”. These days the names of conditions are banded about daily, but what they don’t say, is what it means to live with that condition, beyond the names of the symptoms. Hearing about different conditions is a double edged sword. On one hand, it raises the profile, which might be good, but on the other, it makes even the rarest conditions, suddenly mainstream, just like a cough or a cold. If that condition is mentioned alongside a possible cure, the “possible” is forgotten and the impression that remains is that all version and variable of that condition are curable, even when they’re not. I know that one well, my form of MS, PRMS doesn’t even have one single medication that has the slightest effect on it. Yet other forms of MS can find great benefits from an array of different drugs and MS isn’t the only condition this is true for.
Horrifically, on the news today, I heard that the rate of attacks and abuse towards the disabled is rising. Just as it is rising, so is the rates of discrimination towards us as well. Those are the worst end of it, but it feels as though, it is in line with the general attitude towards those who are ill and that we should just be getting on with earning a living and not taking from the state, regardless how ill we are. All that was part of what was behind my starting to write and to be on Twitter, but in the three years that I have been doing all this, it somehow feels as though things are worse out there than they were three years ago. I can’t put an exact date on it, but without a doubt, this change started somewhere in the 80’s and it’s growth isn’t slowing down. Don’t get me wrong, there are some wonderful people out there, people who are genuinely caring and understanding, but not as many as there once were. How we turn this around, put the brakes on and get the truth of not just the odd individual but the masses out there, I don’t know.
From time to time, the soap opera’s will introduce a character who has some illness, and they compact their story into a few short months. The most recent I can think of was a story line on MND. At first, it was well done, it showed the main symptoms that were visual, but, the biggest problem was the person they chose to actually have the disease. He was the nastiest, most unlikable person you could think of. His becoming ill was seen by the majority of those in the storyline as deserved. As though he was getting what was due to him. To me, this didn’t help our situation at all. Even his death was treated without respect and he is right now, hidden inside a wall. What could have been a wonderful opportunity to really show the suffering and pain, the effect of a terminal illness on everyone, not just the patient, was lost. It landed up as more a moral tail, be a nasty person and this is what will happen to you. Not helpful in any way.
I know the world is full of things that just don’t get the time and attention required to be shown in true depth to everyone. That is why I chose not to use my conditions as my pivot, but the whole spectrum of chronic illness. I don’t know how to change the world, but somehow, we have to put the brakes on, stop the decline in how we are treated, thought of and spoken about. None of us asked to be ill, none of us would choose this life. To choose it would be madness as somehow at some point we diminish, we become second class citizens and in some people’s eyes even lower. Who would choose that?
Please read my blog from 2 years ago today – 27/01/2014 – Being you
Two Rooms Plus Utilities 
Reblogged this on Health Services Authors.
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Thank you for reblogging this, I truly appreciate it 🙂
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Pamela how could we do somethg to help people like yourself be treated properly as they need to be.also what really is ur form of MS? Ive never heard of it.
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Firstly, by being yourself, and secondly, if you see it, do something about it and go to the persons aid. Even just talking about our treatment amongst your friends can help to change opinions.
PRMS is Progressive Relapsing MS. It is like a nasty cross between the three you probably already know. I am on a constant downwards slope, but just for fun, I get relapses as well. There is no remission of any sort, just bad or bader.
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You are right about the changing attitude towards people with disabilities, twice recently I have had insults shouted at me and both included the word “scrounger”.
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I’m sorry to hear this, but it is yet another example how the world has changed. I wish I could pinpoint when it did, and even more so why. It is a sad state to find our world in, surely our role is to care for those in need, no matter what or where that need comes from.
Take care xx
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Reblogged this on Musings On My Life.
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Thank you for reblogging my post. I doubt that any of this can be undone. In some ways, it is sign of the times, just an incredibly sad one, probably the saddest of all, as if we can’t care for those who need it, who can we.
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To a great extent it is politicians—most typically those who represent only the very wealthy, who don’t pay taxes or use the services we who do pay taxes rely on—who are to blame for the shift in attitudes. Forty years of unchallenged right-wing lies by the likes of Thatcher and Reagan took hold on the public psyche, and subsequent politicians picked up the ball and ran with it—enthusiastically.
I have disc herniation in my neck. All the discs are herniated to one degree or another, but C7 and C8 are the worst, especially considering that it is in this area of the spine where nerve clusters branch out into the upper back and arms. When those clusters are pinched, I am rendered largely immobile. I cannot move without burning, radiating pain shooting through my entire upper chest and arm(s) down to my hand(s). One or both nerve clusters could end up pinched so, and in fact this has happened to me on a number of occasions. I too have faced accusations of faking from people, including those with their own health problems necessitating pain killers such as Oxycontin or a variant thereof.
I think it has to do with people developing this mindset that causes them to ignore or dismiss all problems not specifically their own. We don’t see how a neighbor suffering from M.S. suffers because we’re too focused on our back backs and knees, and we forget that other people have health problems too. We learn not to care.
That attitude has been continually reinforced by politicians, and by the media personalities who spread their propaganda dutifully like the loyal dogs they are. Your illness isn’t invisible. It’s that people have learned to stop looking. They learned to do this because there’s a group of psychopaths running this world who are greedy and amoral and want to hoard as much wealth as they can, and they think they’re entitled to the money you and I pay out for services we use. But because they know they can’t get it by telling the truth, they have to lie to us and convince just enough of us to vote away our services by electing the politicians most eager to slash them. That’s why your postal system has now been privatized and is being gutted even as I type. It’s why your once-great health care system is being systematically chipped away. It’s why even though you’re genuinely crippled and can’t work, you’re seen as just a lazy sod who would rather live off the public dole than get a proper job. It doesn’t matter that the reality of your illness prevents you from working. They’ll keep accusing you of faking because they’ve been conditioned to by people who want to plunder your services and reap the profits.
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It is probably the saddest sign of our times, as if we can’t care for those who most need it, show empathy and compassion to those who deserve it, then who can we?
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It’s those rich at the top who want to make us feel inadequate and that somehow they think they can shame us into returning to work, like it will change our illnesses and make us better. By squeezing the ones who just have their heads above water they can turn them against us and make them resent those who need help as if we are the cause of their tax bill and the result of laziness instead of making them challenge the people at the top who use every tax loophole to pay nothing – and why because they fund their political campaigns or the politicians themselves are on the boards of directors at some of these companies, it really is shameful!
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Reblogged this on Seachy Waffles On, Chronic Pain is a game changer and commented:
I feel your pain and agree that it is a real struggle these days with any sort of invisible illness 😦
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Wow, thanks for another reblog 🙂
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You are most welcome, you write so well and it frequently feels as if you have reached into my brain and written my thoughts and feelings 😀
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Because of he work I do online, people are always shocked at my level of disability and illness. But as you know, if we weren’t disabled, we wouldn’t be in front of a computer screen, we would be out of the house. In some ways, it’s a compliment when people think I’m more productive than I am. But most often, it leads to feeling more misunderstood inside of my body. I hope, in time, as you have, I will adjust to that better. I just try to be thankful for what I CAN do, however limited. You are heard loud and clear here. And I always look forward to your uplifting tweets.
Do you have a post about how your pancakes help you?
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This is probably the one that will answer it in it’s briefest form, http://goo.gl/vD8fGO It has change things dramatically, it’s not perfect, but I no longer swallow laxatives and all the other gunk the GP prescribed. As long as I have some nerves working, I hope it will remain to be the answer.
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I think things are pretty similar here in the US as they are in the UK. We are expected to “buck up and carry on”. It is super difficult for many of us to get disability let alone apply for it (the process is RIDICULOUS! And you are MOST ALWAYS denied the 1st round). Many times we are looked at as drug seekers. I would just be happy to get my medication ONE TIME without have to go through a Prior Authorization process with the insurance company. Because here in the US, they stick their nose where it doesn’t belong and essentially have the last say on what it is you take to manage your illness(es). All the things that we go through can be bitter to the core, but many of us, like you, try to put a smile on and do the best we can. We may hurt and feel awful, but we always somehow manage to like better than we actually feel. I really enjoyed this post. It really hit home for me.
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We may not have the insurance companies here, but there is a body called NICE, wrong name for them, but they decide about every new drug that appears, if it is value for money. If they decide that the benefit doesn’t equal the cost, no one gets it.
It seems to hit hardest at new cancer drugs. It is constantly on the TV showing people begging to get a few more months, but if it’s too expensive, they say no. Recently, they said no to a new round of drugs for pain control in MS. None of us can even try them now, it’s just a flat no, no matter how bad the pain.
New people trying to claim disability benefits in this country now have to go through an assessment by a none medical person. It’s a tick box exercise, if you don’t tick all the boxes, you don’t get it and are told to go back to work. It is slowly being rolled out to those who are already on it. I know of one man who was told to go back to work, who died two weeks later from cancer. He died without the benefits and with all the worry.
I guess, each country has it’s own version of bureaucracy, it isn’t always greener on the other side.
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Reblogged this on Dainty Pins.
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Thank you for the compliment of reblogging my post. I truly appreciate it 🙂
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I think the attitude you’re describing began around the time of the global financial meltdown. Of course, us little people were feeling the recession years before that. But while it seems that most of the country has financially recovered in some way, it’s really a false picture. Everyone is struggling, whether they’re disabled or not. And when you have to struggle every day to work and take care of your family, then turn your head and see people who aren’t working at all, you get jealous and angry. You call the disabled fakers.
Those who assess the disabled only provide these services in the hope that they can reduce the amount of people who are approved. It’s all about money. I’ve read that the disabled should stay away from the internet, as it gives the false impression of abilities that actually come and go, depending on the day (hour or minute). Working a 40-hour job is not the same in any way, but many insurance companies deny benefits with the theory that it is. I’m not sure how these people expect the disabled not to be isolated or die from boredom without the internet — it’s called free therapy. 🙂
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Unfortunately, it is like this in the US too. We have to hide our illness, that is sometimes where the concept of invisible illness comes in because some of us try so hard to try and hide so as not to be judged.
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