Some times blog posts are triggered by life events other times they are triggered by something I have read. Today’s blog post was inspired by an article that was shared online by one of my friends from Psychology Today “Six common misconceptions about the chronically ill” by Toni Bernhard J.D. I have faced all of them at some time or another. The article really got me thinking about the points the author raised and there were particular ones that really resonated with me.
As the author states one of the first misconceptions the chronically ill face is that we don’t all look sick. I have had people say to me “you are looking really well”, when I know that when I last looked in the mirror I was doing an impersonation of Casper the friendly ghost. When I first got ill this really used to annoy the hell out of me. As time has progressed I have decided to not react to statements such as these, after all there have been occasions when my husband has said the exact same thing. I may have the energy to kill him but disposing of his body would be a real nuisance!
Many people don’t “see” how sick I am. They don’t realise the effort it has taken to get out of my bed let alone get dressed and washed. They weren’t with me as I took a mountain of medication to ensure there was no breakthrough pain and lets face it unless you know someone really, really well (and although my husband does know me well, he doesn’t always “see”) it is usually only my mother that says to me “Oh you look awful, are you OK?”. She can also tell in my voice when I ring her in the morning how I am doing and will keep questioning me until I admit I feel awful. She can see immediately if I am having a rotten day and I am dosed up to the eyeballs. So I can’t really get mad at people when they say “You are looking well”. It does irritate me but I have learnt I need to use my energy in more constructive ways.
What is hard about people saying that you look well is the inherent belief that if you look well you must be feeling well. A long time ago a lady, who worked for me and has since sadly passed away, came in shopping whilst she was off work undergoing chemotherapy. Everyone was saying to her how well she looked. I could see she was finding this a little hard to deal with. I understood enough to know that chemo is no cake walk and I stopped to chat with her. As we stood and chatted another member of staff came up and said how well she looked. Sheila just smiled and said thank you.
Once they were out of earshot she turned to me and said ” I wish they realised I am puking my guts up for hours each day. It’s the bloody chemo that’s giving me a flushed face, that makes me look like I am OK and not dying”. I held her arm and told her that it was just so lovely to see her and that we were all thinking of her. I had to hold back the tears when she told me she was losing her battle against the cancer that had returned for the 3rd time. The moral of the story is no matter how good you think someone looks when they are chronically sick, you have no idea what they are facing. Choose your words carefully.
The concept of radical resting or #3 on the authors list is not a new concept for me and it is often the one that is most misunderstood by others. A few years ago I was resting for an event that I was desperate to attend. I knew that attending this event would wipe me out physically and mentally for many weeks afterwards but it was something I really wanted to do. Unfortunately the event clashed with a friends 30th Birthday meal. The friendship had been on the wane for quite some time at this point and I knew that she wouldn’t have thought about the disabled access at the restaurant and I would be sat with a group of people I didn’t know.
I had booked and paid for the event 4 months in advance, well before she had decided what she was doing for her birthday. The friend knew that I was going but couldn’t understand why if I was resting that I wouldn’t be able to attend her function on the following evening. She was of the opinion that if I could attend one that I could attend the other. After all I had been on strict bed rest for a month prior. I kept explaining over and over again but my explanations fell on deaf ears. I felt like I was being emotionally blackmailed as every few days leading up to her birthday meal she was sending out a text message to all that were invited to confirm their attendance so that she could book the restaurant. As I had already explained my position I didn’t understand why I was still being included in the group text messages. It hurt me that she refused to accept that despite my radical resting I wouldn’t magically be better.
When you are chronically sick spontaneous events rarely happen. Outings require such meticulous planning with resting, medications ordered, transport arranged and schedules cleared to allow for resting afterwards that spontaneity has to take a back seat. It irritates me that people assume that with a few hours in bed I am good to go, it doesn’t work like that. I have rested for weeks before a planned event and still had to cancel at the last-minute. I don’t decide whether my body is going to cooperate, it does. It is extremely frustrating to have rested and organised everything so that I can attend an event only to find on the day I am too sick. It makes me feel robbed, not only of the chance of going out but also all the time I have rested to end up achieving nothing. People assume I use my illness as a cop-out so I don’t have to attend things I don’t want to. It’s true there are some events I won’t go to but I will tell the person that has invited me, I don’t use my illness in that way.
Point #4 from the article leads directly on from #3, the misconception that if a chronically sick person is enjoying themselves then they can’t be that sick (or as the author says if they are enjoying themselves they must feel ok). The problem is when people see you either out at an event or at home entertaining they don’t see the planning and resting before the event and they don’t see the consequences after the event. All they see is you looking and acting “normal”, they don’t see you surreptitiously taking extra medications because the pain has kicked in or the hot water bottle discreetly placed in the waistband of your trousers to ease the muscles spasms. If you are chronically sick and anything like me you do all you can to avoid drawing attention to yourself.
We are then disbelieved when we try to explain our illness and the way it affects us because for one night they “saw” you acting and looking normal. It’s frustrating that we are judged on the few hours we are visible in the outside world not the hours spent behind closed doors where we feel like we are slowly dying just through the intensity of the pain or the intensity of symptoms.
Back in June my husband and I held a “40 1/2 Birthday Party” so that I could socialise with people and catch up with life outside the house. What the attendees didn’t know was that if the event hadn’t been taking place in our home I would have cancelled the afternoon of the party as I felt so very ill. I soldiered on and enjoyed myself but was very ill for several weeks afterwards.
What I find especially hard to deal with is the judgement I get from within the chronically sick community. When others heard I had a party at my home I had comments made that “they were just too sick to do anything like that” the implication being I couldn’t really be that sick if I had some friends over. This was from people who know nothing of what my life is like. They are unaware of that I have a chemical toilet downstairs because I can’t manage the stairs more than a few times a day. Without the chemical toilet I would be stuck upstairs all day everyday as I need to use the loo so often. The fact that I limit the amount I walk around so that I don’t use up too much energy or that I go to bed most afternoons because I can’t cope with sitting up all day or the extra stimuli that being downstairs exposes me to. When you can’t even enjoy yourself twice a year because of the judgements of others in the chronically sick community things have gone very wrong. They are the people who know what it is like to be judged by others but are quite happy to sit in judgement of me.
The last misconception the author talks about and the one that really struck a chord with me was “Being at home all day is a dream lifestyle”. Years ago sat in the back of an ambulance a paramedic said to me “It must be great not having to go to work, get benefits and watch Jeremy Kyle all day”. I was so shocked by this I didn’t know what to say. I was also quite busy sucking on gas and air to try to get some relief from the abdominal pain I was experiencing. This statement came from a medical professional, someone who is supposed to look after the weakest and most vulnerable people when they are in need of emergency medical help. If that’s how he views the disabled then what hope do we have?
People assume not working is some sort of life of luxury, masses of free time to indulge in whatever pursuits take your fancy. Most people don’t stop working until they reach 65, I stopped working at age 34. When you are chronically sick there is no life of luxury or free time, most of your time is spent managing your condition and worrying about money. If I could have my health back I would be straight out to work.
Being at home all day everyday is socially isolating. The friends you have at your job rapidly disappear because it becomes clear very quickly that other than the workplace you have very little in common and they have to make a physical effort to come and see you. Ask anyone who has been on maternity leave or on long-term sick leave how many people they have seen once they have been absent from the workplace and the majority will answer either no one or just staff from the Human Resources Department.
Not working either through “normal” retirement or chronic ill-health increases your risk of depression. No longer having a routine, a purpose or the sense of achievement you receive by being an active member of the workforce can lead to immense feelings of loss. I do miss my job, I miss the social interaction. There are obviously aspects I don’t miss as anyone who is working will tell you there are aspects of their job role they really don’t like.
When I left work I felt I had no purpose, that I contributed nothing to society. I still struggle with this every so often, usually when yet another medical professional has asked the dreaded question “Do you work?” I feel like I have to justify my existence being thrown on the scrap heap at 34 was hard to deal with. To cope with it I started blogging it has given me a routine and sense of purpose.
No one would ever chose to be so sick that they couldn’t work. Obviously some people stay at home to look after children and find it socially isolating, I do appreciate that. However they have the power to change their situation. When you are too sick to leave your bed let alone leave the house your options are limited.
Not having to work because you have won the lottery is a luxury, retiring early because you are wealthy is a luxury. Having to leave work because you can no longer perform any job role is not. Being at home all day every day is not like being on “holiday” from work. It can be soul destroying. In the early days I would get up in the morning and cry because I would sit and contemplate whether or not I could handle everyday being like this until I died. I didn’t want it to be like this. So before you decide to tell someone who is chronically sick that you would love to not have to go to work and stay at home everyday, think about it. Do you want the chronic illness that goes with it?
the myasthenia kid 
Very well done piece! It is so true and so sad. I like how you tied in the article it validated many of the ways I feel.
I am so sorry that you deal with the many health issues you have and people’s misconceptions on top of it. Your blog is amazing, you are contributing wonderfully to society.
Well done!
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Hiya Bee,
Thank you for reading and commenting as always! Thank you for your lovely comments.
It is strange how sometimes things you read just trigger a chain of thought. 30 minutes before I read the article I was saying to hubby OMG I don’t know what I am going to write about for Mondays post. Very bizarre how these things work.
People will always sit in judgement of others. I do it and so does everyone else. I just wish when it comes to my health they would realise seeing me for a few hours gives them no clue to what I deal with on a daily basis. I imagine that you feel the same.
Thank you for your lovely comments I really appreciate it.
Rach xx
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Hi Rach,
Thanks for the chance to read the Article. I have read neither the Article nor your’s, or whoever felt the need to respond after reading both.
However, before I go on to read the article I felt that I have to state one thing, purely from the title the author [presumably a Psychologist of some expertise in the Disability Field, day I say Community without being shot down in a blaze of [not so glorious] fire as an exclusivist] chose to headline in such a manner to make a point, or to gain points for being contemptuous of ‘Disability’ Chronic or otherwise;
So [I know it”s gramatical faux pas to begin a sentence with a conjunction] JIC I begin to digress again I’ll make my point, read the article and come back. So who are “The” Chronically Ill? Does the Author mean people with Chronic Illness of people with Chronic Long Term Disabilities? If my use of a Conjunction is a Grammatical Howler what is using “The” as a “group determiner” for Disabled People. You see my digressing had a point Rach. Where do such people get off Using such a determiner for Disabled People? I get more and more annoyed being such a person who some professional believe they have the right to group in such an offhand and very unprofessional manner. Chronic Disability is such a wide ranging group of people. So for somebody to use such offhand manner is extremely lazy. Anyway, being guilty of abusing Psycho babble in the same off-hand manner I’ll push off and read the article. Point made do you think Rach? I’ll be back once I finish the article. Tomorrow probably.
Postscript:
It wasn’t my intention of making light of the subject things Rachel, I could probably list 10 things and the six in the title would be among them but I shalln’t spoil it for you even though, like me, somebody has told us much the same during a visit to the doctor or to the hospital. It’s awful So, I’ll go off and read the article before I start another rant.
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Hi David,
Thanks again for taking the time to read and leave a comment on my blog.
I am sorry but I am going to have to bow to your superior knowledge of grammar / the English language and admit much of what you talked about went way over my head I am ashamed to say. I have never been taught verbs or nouns at school (very poor I know) so to start throwing around terms such as conjunctive etc means I am at a loss because I simply do not understand. Which embaresses the hell out of me.
I agree with your annoyance about the authors title – who are the people she is addressing? The author suffers from fibromyalgia and a lot of her work is focused on that group. A lot of it is published by fibro groups on social media. As you know from previous posts I don’t like labels but what do we call ourselves? Some hate the term disabled and others loathe the term chronically sick/ill. So what do we do?
I think she was (in her article) referring to those who had been suffering from a chronic / disabling illness for sometime and she wanted to highlight some of the frustrations felt by those in that community.
There are many more than six things that are common misconceptions and like you I think I could probably rattle off another 10! However I could only look at 3 as I was already over 2,000 words looking at them. I have trouble with the length of my posts because I just enjoy writing and sharing my posts!
I hope you enjoyed the blog post and I am sorry it has taken me this long to reply (very tardy I know), life just gets in the way sometimes and the physio!
Thanks again
Rach xx
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I’m sorry about my grammar, unfortunately Chris calls me a Pedant and she’s right I am. I’m like a dog with a bone sometimes.
However, in addition to my response below, you’re right about Labelling. It really is unfortunate that people misapply terms for Disability or Illness. The problem is that many Disabled People are not ill, equally, many ill people are not Disabled. It is this particular distinction which Disability Lobby in the 1960s fought to change, hence the the Social and Medical Models of Disability the former that Disability is related to the Barriers placed in path of Disabled People thereby limiting their access to an independent life. Whereas the Medical Model identifies Disability and Illness as inextricably linked. The model see Disability as being about cure and and individual limitations. It is not cut and dried today. However, the vacillation in some areas has done Disabled People no favours. I for one, as a newly disabled person in in 1992 didn’t initially appreciate all that our brethren did to improve the lives and lifechances of Disabled People in succeeding generations. The culmination of this battle was the Disability Rights Commission/Disability Discrimination Act since, much to the shame of the Tories, subsumed by the Equality and Human Rights Commission. Which, one could argue, will cease to be if Cameron and his Privileged and Rich Right Wing Cronies win the next election and Repeal the Humans Rights Act and withdraw from the European Convention on Human Rights. No rights for anybody? The Rich and the Privileged once again continue to hold sway in this country with the poor to continue as the bottom of and the brunt of the new government’s austerity policies with Disabled People feeling the full brunt of those measures without the protection of the Human or Disability Discrimination Act.
The Tories are the Masters [I use the term advisedly because there’s actually only one woman on the Front Bench at present] of the pigeon hole.
The article misses the point on oh so many levels.. A few months ago the Herald Described Fibromyalgia as a rare condition which is far from being the case today. Still one should not compound the error by making the same mistakes she does. Nor do I wish to belittle her experiences either, she has her own demons as do I and we both live our lives according to them, at least I do and as much as I try I cannot cast them off.
Anyway, as I said more than an hour ago. I’m going to try and sleep.
Ciao Rachel. Have a good day. Best to Lucy who has been pigeon-holed as much as anybody for as long as she can remember and to your mom. Take care.
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So, everybody has read my comment about the article from the point of view of purely having read the title. Well, with the exception of my point about “The Chronically Ill” the remainder of the response was intended to make a point, the point being that those who make assumptions, i.e. the article was written by a Psyco-Professional and was written from that point of view.
WRONG, WRONG, WRONG
It goes without saying that there is no such thing as an “Amorphous Group of People called The Disabled” As Ms. Bernhard suggests in her ‘6 Misconceptions’ there is little to admire about Having a Long Term Chronic Disability. I hesitate to apply a massively loaded adjective to what she says. In the US to admit that you have a Mental Health Disability leaves one open to significant stigma, Americans have an overt problem with Mental Illness and their response to Disability Generally covers a range stretching from somewhat antediluvian to the use of sickening platitudes. An American with Mental Illness in the 21st Century is almost certain t to never me elected to be President whilst somebody with a Physical Disability has only a very slightly improved possibility of being elected. Whereas in the UK people would have it that we’re a lot more enlightened when it comes to ‘Frailty’. Not my word, or should I say it is not a word that I would apply to anybody with a Disability. Never. So why would the media in the UK? How many courageous,, brave life changing performances happened at the London Paralympics? I finally turned the TV off. Just as I did when Jessica Ennis’ bum was considered for the umpteenth time before her performance was discussed. It’s a scary thing isn’t it. Why cannot people be taken at face value. Disabled people have been continuously pilloried in the media as Gold Diggers and Benefits Cheats. Anybody who can afford to actually buy Gold whilst claiming Disability Related Benefits and being Disabled is ether not eating or is not paying anything for Disability Related Expenses that I know the majority of Disabled People have. Nobody who is disabled is going to make masses of money, there’s a Misconception not to be ignored. Nor should the fact that Hate Crimes against Disabled People have increased since the Coalition came to power. A coalition that includes a party of “Social Democrats” who before they became part of this Government voted, almost, en bloc for every rise of Disability Related Benefits. When changed I wonder.
Unfortunately, many misconceptions about Disabled People relate to their health or lack thereof. Misconception upon misconception For instance, there;s a misconception that everybody who has a Spinal Cord Injury is paralysed from whichever level of the spine is damaged. That people with SCIs feel no pain, wrong again. Also all disabled people have the same experience of disability. Once again wrong. It is a misconception that people with the same disability have the same experience let alone all disabled people. In addition, we should never assume that everybody’s experience is the same. There may very well be some things that might be the same yet the degree to which those experience may vary wildly. For instance the the idea of a Critical Rest, what is a Critical Rest? I’m typing this a 0400 which means that I might get nap in 6 or 7 hours. I daren’t look in the mirror because, as Rachel already suggested wan is nowhere near the Actualite.But then we have to figure how we cope with misconceptions, those from friends and family, from employers or colleagues, then from strangers. What is somebody who spits at you suggesting, the teenager who call you a spaz in the Supermarket aisle. What about the customer in TESCO who moves one out of the way whilst you’re in the queue at the till so that they can place their shopping onto the conveyor. It doesn’t matter that you’re also putting items on the conveyor. IT’s amazing that they see you as a just another empty trolley blocking their path. Or you ask a question and the person answers your wife, care, parent. What does that say about misconceptions, that because you’re in a wheelchair you cannot respond to the answer to a question Just because we cannot walk our brain does not work. How the Parliamentary Candidate prior to the last General Election stated “Disabled People are not as intelligent as ‘Normal’ people” to a room of Disabled People all of whom had Degrees or Post-Graduate Degrees. That was coincidental. But a politician who utters such a trite and asinine statement without consideration for how the people in the room might feel and they/he is part of the Government. What more can be said about Misconceptions.
I made a mistake when I read the title of the article. However, if Disabled People use language about themselves how can we expect others to improve theirs and not to fall into the same traps that the media ignore because they consider Disabled People and easy target who have now power to fight back. IT’s time that we stood up for ourselves. Just because we are unable to persuade employers to employ us because they see what they want to see doesn’t mean that we should allow the media to get away with reinforcing misconceptions about Disabled People. I have given interviews to the media previously and I am not surprised that they consider us as less than we are because we them to get away with it far too often, There are far more misconceptions about Disabled People than the 6 that Miss Bernhard identifies. I would like very much to be able to do as she does. I’ve been in Chronic Pain for nearly 25 years and taking High dose Opioids for a similar period. It is tiring. Looking like a wet dish rag is a fact of life and I have grown a beard in lieu of make-up. OOOPs, sorry that’s another misconception, isn’t it?
So, whilst I apologise for my misconception prior to reading the full article. Much of what I said remains no less true. There is no such group as “The” Disabled just as there is no such group of people as “The” Chronically Ill, Unlike Women, People of Different Races, Disabled People cut across Gender and Race Lines. One cannot help being born as a female, there are blond women Brunette Women even pink haired women, there are African Women, Chinese, Japanese, Indian women. All of who could be Disabled. Culturally Disability is viewed in very different ways. I remember living in Germany in the 1970s where disabled children were hidden at home, rarely left their homes. In the 1950s and 1960s disabled children often [more often that we would like] were institutionalised in “Special Schools”. A life that was not a pleasant experience I’m certain. I came to Disability late in life. My life experience has been totally different from that of somebody born in 1956 who was placed in a “Special School” may not have seen parents for more that a few days per year. I didn’t see my family from choice. I joined the Army. Life experiences different. How can I possibly measure my life against somebody who spent the first 30 or more years in a special school and, may very well be a full time resident in a Nursing Home. Who had the better life? We’re both disabled but that is all that we have in common. Therefore, to put both of us in the same pigeon hole by what right is such disrespect allowed to continue. The votes of 26% of the voting population on a turnout of 65%. So where does the root of this misconception lie? Does the fact that the Government needed a Scapegoat, as they always do, to blame the economic ills of the country on, because they cannot afford to place it where it truly lies. Do you want the capital that lies in the hands of the Multi-National Companies who should accept responsibility with both hands and, should it all be layed at their door more capital would flood out of this country to economic pastures new or does a government create a “Moral Panic” against a small ‘sub’ cultural group of the population who are most likely not going to be able to fight back? It’s better they would suggest to support those inherent misconceptions about disability and Disabled People and for a few crucial months divert the eye of the public so that that scapegoat can be firmly fixed in the public’s minds eye. Therein lies the problem. “The Gimp is a fault” I wish I was wrong and that is not the case but how many Disabled People have lost their only income since this government came to power?
I apologise for my grammatical errors, luckily there is no mirror nearby. I hope I am forgiven.
Have a good day. I’m going to try and get some rest.
David
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Hi David,
I hope by now that you have managed to get some rest – radical or not!
I want to thank you for leaving your comments which I always enjoy reading. You always raise really interesting points although sometimes they do make me feel a little out of my depth such is your intellect.
I would never claim that my blog posts encompass the whole of the disabled or chronically sick world. I only speak about how I see things and how events affect me. I take onboard your points that not all disability is the same however I would have to argue the point with you that the legal definition of disability in relation to the workplace does cover those who are chronically sick, even if they themselves do not consider themselves to be disabled. A person only needs to have a condition which is likely to last longer than 12 months and impacts their life at home as well as work to be afforded protection under the Equalities Act 2010. Not that it or the previous legislation The Disability Discrimination Act was ever properly afforded to me in a previous lifetime. Unfortunately as this is a written response you can’t tell through my voice that I am being highly sarcastic. After all what is the point of legislation when employers, service providers and anyone else involved can just ignore it and not face prosecution.
Possibly you find my model of disability wrong as I have always applied the “ideals” of the DDA and Equalities Act when I am writing so my scope of those who I consider as having a disability is larger?
I hate labels but how do we describe ourselves? These are the words currently used. Use a different descriptor and the message gets lost because your audience is trying to work out who you are referring to. It is a difficult situation to be in what do we do?
I like you hate the way disabled people are “used” as either an inspiration to norms or we are the devil incarnate. There seems to be no middle ground and even those who are used as inspiration can find themselves the focus of a takedown piece by the media if their lifestyles fall foul of the editors “ideals”. It annoys me no end that we can’t be seen as people first who happen to have conditions and not that we are our conditions. Ignorance is everywhere from the medical professionals treating us to the man or woman in the street.
I have no argument with the points you have raised about how much further on we have moved as a society but also how much more we still have to do to create a level playing field for all society to be able to reach their potential.
My blog is about my experiences about my disability. I can’t write about someone elses disability / condition because I have no experience of it. I do slightly feel that I have made you angry by what I have written for which I can only apologise no offence has been meant. I hope that I am not reinforcing societies ideas about the disabled but because I don’t claim to be speaking for every disabled person in the country, the same as I am not speaking for blonde woman approaching 41 who are overweight. I am speaking about my personal experiences and many people who have EDS / Dysautonomia can relate to this as can others with chronic conditions. Coincidentally some of those who have been diagnosed with Fibromyalgia actually have Ehlers Danlos Syndrome type 3, it is just medical professionals still hold the belief that this condition is too rare for people to have or just lazy doctoring. Many of the symptoms of Fibromyalgia and EDS are the same, fatigue, muscle pain, joint pain. Perhaps that is why I understood Ms Bernhards article and why I could understand the misconceptions people with these conditions face.
In one blog article I couldn’t cover every misconception ever faced by a person with a disability or medical condition. Firstly it would be much longer than 2,000 words and secondly I don’t have experience of those conditions or the misconceptions those people face. So after reading the article I based my post on those points I felt I could relate to. There were points within the article that I didn’t relate to and thought were a load of tosh however it doesn’t diminish the authors experience of her condition.
Our politics and thoughts about this government and the media that it is being propped up by are almost identical. I can only hope come May 2015 people are provided with a viable alternative to the current bunch of crooks. I am fed up with the divide and rule mentality within this country that sets everyone against each other because it distracts them from what is really going on in the country.
I want to thank you again for leaving your thought provoking comments. I really do look forward to seeing your opinion on my blog posts and hope that you continue to write them. I also hope you have managed to get some sleep.
Love to you and the family,
Take care
Rach xx
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