Tell me it isn’t so

I have had a few tweets in the last weeks that have left me somewhat concerned by what is happening in the outside world. I have found some of them disturbing enough, that I am beginning to be truly glad that I am housebound. I had realised before I was no longer able to go out and about myself, that there was an element who had developed a somewhat malicious attitude towards the disabled. When I recently wrote a piece about how things were several years ago, I had my eyes opened by some of the comments, but now I am getting the impression that it is even worse than I ever thought possible.

I received a tweet yesterday, which ended with this ” it makes it harder though when it’s not understood; the pain doesn’t leave me the energy to explain/defend”. I found that so wrong, so distressing that someone should even feel that way, that I responded with the following “We should never have to defend ourselves, just because pain can’t be seen. The fact we feel it makes it real enough!”. I was shocked to find that it received four retweets and fourteen likes. If you don’t do twitter, trust me, that is really high, considering, it was a reply tweet. This isn’t the only time in the last few months where I have spotted a high response to tweets of this nature, something I don’t remember even just 4 years ago when I first joined. Mention anything to do with being treated correctly by others, and the responses have risen across the board, and not just when it comes to the disabled. I can’t help but get the feeling that there has been a huge mood shift out there when it comes, to something as simple, as being a caring human being.

As an outsider, someone who has little contact with the real world, I find this distressing. If the world were filled with caring people, that tweet would have been ignored, or better still greeted with confusion. Clearly there are far too many, who have found themselves having to explain what is wrong with them and worse still, feeling as though they are under attack, simply because they are ill. When I wrote the post about my past a few weeks ago, several people came back with their own explanations as to what was behind it. The most common one was, to place the blame on the government and their policy of forcing the chronically ill, back into work, even when they aren’t fit enough to. I would have expected, that if that was the case, people would become more caring not less, as if I thought something was unjust, that would be my response. Yet the feeling seems to be, that people are actually agreeing with the government, and now see all sick people are scroungers and fakers.

It’s not only on Twitter and here in my blog that I have come across this change. Yesterday, I can across a blog, from a woman who is actually scared to leave her home, because of the verbal attacks she has suffered. I am at a loss as to how the world has changed this dramatically and I’m sorry, the government theory to me just doesn’t wash. There is hardly a week goes by, that we don’t see yet another case, of a person who has been fighting to get, not money to go down the pub with, but money to allow them to eat. Money, they are entitled to, who have long-standing medical conditions that they will never recover from. How can the millions who watch these heart-wrenching stories, not feel compassion? How do they watch, then go out and attack someone who is in a wheelchair, simply because they are ill? I’m sorry, but I don’t get it.

By chance, I caught part of a program that was on last week about discrimination. It was looking at racial discrimination, but something was said in it, that set me thinking. They were in a poor area of a large city, a woman who was receiving benefits, simply because she didn’t have a job, was verbally abusive towards an Asian man standing outside his shop. Afterwards, she realised she had been caught on camera and she tried to explain herself, the telling bit, were her last words, “I’ve got nothing against him, I’m, I’m just jealous.” Could we really have reached a point, where there are people out there, who are quite simply jealous of us? It’s a thought, that I find disturbing, in so many different ways.

This is now my ninth year of being housebound. The last time I was out and about amongst people who I didn’t work with must be, two or three years before that. As those who have been reading for a while know, I worked right up until 5 years ago. I was never in the position, or locations, where I might have mixed with people in those financial positions. I have been treated appallingly at different times in my life, by both those I knew, and by strangers, but I can only imagine, what it is like to be shouted at simply because I am disabled. I truly feel sorry for those who have gone through such a thing, but I also feel sorry for those who are carrying such abuse out. They may be shouting out that we are scroungers and so on, but I think it is their own position they are really shouting about. We the disabled, are highly visible and easy targets. It leaves me cold that society has slid into such a position.

Those of you reading today, hoping that I would give an update on my abdominal pain, well, your right, I have been avoiding the subject, but here’s an update. It’s a bit better, above my normal, but nowhere near as bad as the other evening. I have decided, though, that I am going to call my doctor when his surgery opens next week, if for no other reason than to get better pain control. Whatever happens, there is no way that I can keep on living with this pain, something has to change.


Please read my blog from 2 years ago today – 28/02/2014 – Disruptive sensations

My day is once more running behind but for once it isn’t my fault. I actually was up an hour early this morning as I woke unable to cough and really bad pain in my throat, sleep wasn’t going to be an option, so I just got up, with thought that I would be able to rattle through everything and have an early sleep this afternoon. Adam has taken a long weekend so he is still asleep but is actually going out…..





4 thoughts on “Tell me it isn’t so

  1. Pam,
    It so really sad that our society has transformed into this type judgment towards people who are “Chronically Ill”, and or have a disease or injury that can not be seen from the outside, but on the inside it is wreaking havact on your body and your life. On earlier posts I stated that I could no tell you that I know how you feel with your pain and the condition you are dealing with because I am not in your shoes and everyone deals with their specific situation differently. But, on this topic that you wrote about today, I can say that I can say that I understand. You see, if some was to look at me they would say, and they do, why are you not working. Why are you getting all of these entitlements from our Government that makes our country go so far in debt. You must be lazy and want a free ride. If I was a veteran that was missing an arm, leg or eye then I am sure people would not be saying this. As a matter of fact it is not only strangers but also friends. You see Pam, when you have invisible injuries or diseases/conditions that people cannot see and identify with then they fee that they have the right to judge you. As I say it, they are the judge, jurry and executioner. They don’t understand because you may look normal on the outside, but on the inside you are being torn apart by your condition/disease. I would say some of it is ignorance, some jealousy (if they only knew), and then the rest is how our society has become so self centered. They are so concerned with what they think is right, they feel that they have the right to pass judgment. As I said earlier I understand your delemma. I think I had mentioned in one of my earlier posts that I have Traumatic Brain Injury related to my service in the United States Army defending my country. At the time of my injury TBI was not even considered an injury in the military especially when it was from being knocked unconscious, with a sevier concussion. The medical world did not know how the brain could get injured when you have no wounds, no blood. Well that was on the out side but what was happening on the inside was wounds, and blood, but no one could see it. It was so aggravating for me to describe my condition to my doctors, my wife at the time (now ex) and my peers. It was as if I was making this whole thing up. I have suffered from constant head aches and at least three to four migraine head aches a week. I have minni Seizers from my TBI and take medicine for these conditions. At times I will not sleep for days, then there will be times where I have to take a knap everyday or I will just fall out of my feet. You see I don’t know when or how my condition is going to react. Pretty much either do my doctors, so when you have conditions/disease that our doctors can’t even understand it is hard for others to also understand. But, this does not give them the right to judge us. It is my understanding that MS, is different with each individual, it is not one size fits all. Then I understand that you have the aggressive form of this disease. It is the same with my TBI, it is not the same with everyone. All I can tell you is, don’t let those people comments or non verbal gestures affect you. I know it is easier said then done. It has come down to in my life that the only people I am close to is my wife (of one year) and my children. You see, they don’t judge you, they love you unconditionally. I am sure that if Adam could tell these people as if my wife (Galyna) on what we go through and the pain and the medications that we have to take that we are not trying to get over on society or that we are not lazy or slackers. I have came to the conclusion I don’t give a f_ck what anyone else thinks because the only thing that I control is the man in the mirror and with my condition if I sit hear and worry about these people who don’t take the time to understand that it is not there position to judge me then they can take a leap. But, that is me and how I deal with my issues. It is very difficult dealing with these injuries/conditions/diseases that are “Invisiable” to the world.
    I agree with you on the follow up with your doctor on how your disease is effecting you and finding out what you options are. Living in constant pain and discomfort is not living at all. I hope things work out for you, and my comments are from my view as a person who is disabled and is not meant to judge anyone or any condition.

    Take care and I will be praying for you.

    Craig Lee Hummel


    • We have so much to deal with daily, it is just one more thing that we don’t need. Society needs a wake up call. All we can do is hope that one day, they will, because too many are suffering because of them.

      Take care of yourself and stay surrounded by those who care (((Hugs)))


  2. Thanks for your site Pam. I have noticed the same shift. In the past people had a ‘we must look after the sick & elderly’ attitude. Now it often seems to be
    ‘to judge all sick people as highly suspiciously as they may be lazy scroungers ‘.

    I’ve been bedbound for several years. I’m absolutely desperate to live a normal life. To sit, stand, walk, shower or wear clothes would be a dream. To go in the garden or feel the sun on my face. To see family or most of all to become a mother. Illness prevents so much that many take for granted. Some people resent those too ill to work. If only they new the living hell we go through just to breath & exist, laying here 24/7 dependent on others for everything, in constant pain. If they swapped places even just for a day they’d realise how truly lucky they are to be healthy enough to work.

    I think all these ‘benefit street’ programs have a lot to answer for. I think they have subtly changed public perception of people claiming benefits. They often show healthy people claiming disability benefits. Understandably that frustrates everyone but they’re the minority! But now it’s as though most sick people are doubted & that’s a horrible cynical development. I hope attitudes change. It just increases the feelings of isolation. People’s assumptions can be deeply hurtful.

    Thanks for sharing your world, I hope your pain gets under control & things improve for you. Love to all


    • I’m not sure what it will take to re-educate the general public, as leaving things as they are, just isn’t right. I agree, that the TV has a lot to answer for, but I think there are so many factors to this, we could list them forever. I some how don’t even feel that a day in our shoes would fix many though, they would simply say,”well, clearly I didn’t mean you, it’s the rest of them.” What they don’t get is that abusing just one of us, is as bad as abusing all of us.

      I hope you get your dreams one day 🙂


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