“What you do, the way you think, makes you beautiful.” ― Scott Westerfeld, Uglies
image from commons.wikimedia.org
That which God said to the rose,
and caused it to laugh in full-blown beauty,
He said to my heart,
and made it a hundred times more beautiful.
Rumi
Illness: the final frontier. These are the voyages of the Starship medical ship Disease. Its five-minute mission: to explore strange new names, to seek out new diseases and new acronyms, to boldly go where no few doctors have willingly gone before.
Some of you may have noticed that I have been “Missing in Action” for a few days. I literally jumped onto WP and dropped in a few songs and jumped off. I haven’t been in a good place and I wasn’t sure I could get my brain cells to co-operate enough to write something which was going to come out coherently. Well, here it is and something a little different, a rant with an edge.
I had to attend an appointment with my doctor. I’m reaching have reached the point where I detest going and feel infuriated when I am returning home. It makes going there counterproductive. I have always had an inherent dislike for the labeling system, and not just within the medical fraternity. It is endemic in society. Now, it isn’t enough to append labels to everyone, thereby dehumanising people by placing them in an arbitrary group for the benefit of…..who? The Government? It’s almost irrelevant if it wasn’t so invasive, but its aim is so that we are able to be “controlled” with greater ease.
image from http://www.projectknow.com
Not content with being labelled and grouped we are now being reduced even further by being diagnosed as little more than a group of letters. Such as:-
ADD and ADHD – Attention deficit hyperactivity disorder (ADHD) is a disorder that appears in early childhood. You may know it by the name attention deficit disorder, or ADD. ADD/ADHD makes it difficult for people to inhibit their spontaneous responses—responses that can involve everything from movement to speech to attentiveness.
http://www.helpguide.org/mental/adhd_add_signs_symptoms.htm
The information I found basically made ADD and ADHD into one category. All the signs, symptoms and treatments appeared almost the same. They appear to simply transition adults with greater ease if they are placed in the ADHD basket. By that I mean if a child is diagnosed as ADHD they move into adult ADHD, there appears to be a very small number of adults referred to as having ADD.
Bipolar Disorder – Bipolar disorder is the name used to describe a set of ‘mood swing’ conditions, the most severe form of which used to be called ‘manic depression’.
http://www.blackdoginstitute.org.au/public/bipolardisorder/bipolardisorderexplained/
Bipolar is treated the same as any other ‘mental’ disorder. It appears that any depressive illness is graduated eventually towards Bipolar, a nice easy fit for the sake of treatment.
image from theredpillnews.blogspot.com
ME/CFS – (Myalgic Encephalomyeltis/Chronic Fatigue Syndrome) suffer from post-exertional malaise (flu-like symptoms following activity). CFS is a neurological condition that can affect children and adults of any age. Other symptoms include pain, disrupted sleep, difficulty thinking, and changes in blood pressure, hormones and body temperature.
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Chronic_fatigue_syndrome
FMS – Fibromyalgia – Fibromyalgia (Fibro) is a name given to a group of symptoms marked by generalised pain and muscle stiffness. These symptoms can be felt in all different areas of the body. Extreme fatigue (tiredness) and sleep problems are also common in fibromyalgia. Fibromyalgia does not cause inflammation or damage to the painful areas, but seems to be due to an over active pain system.
https://www.arthritisvic.org.au/Conditions-and-Symptoms/Fibromyalgia
These last two are cut from the same cloth. All that is being done is simple semantics being argued. Post exertional malaise is different from muscle soreness and stiffness? It wasn’t when I went to the gym. Tiredness and sleep problems are the same as disrupted sleep – within parameters. It is all another way of segregating people into nice little baskets and putting labels on them. But why?
image from http://www.bonkersinstitute.org –
This may seem like a gigantic waste of time, however, my point is that the medical “powers that be” are manipulating the terminology to describe various conditions for their own purposes. Purposes we are not made aware of.
Whilst one source will say that ME/CFS will occur often with Fibromyalgia, another source will declare that FMS and ME/CFS are totally separate ailments. Yet the descriptions themselves show overlaps. I’m not wishing to be contrary, however, I am trying to show that this is a veritable minefield when someone is trying to find out what is happening to them, and getting a diagnosis.
Many of those who have been visited by one of these delightful acronyms over the years, have battled for years to get a differential diagnosis from ONE doctor, let alone a consensus so we can get the best treatment possible. Most of the time we have to struggle on alone, trying to get someone to ‘admit’ there is ‘something’ wrong. Not only is it wrong, it is criminally wrong.
image from http://www.salusbehavioralhealth.com
In my opinion, splitting each part of the symptomology into small groups and relabeling it slightly, is another way for “the powers that be’ to be able to say, a smaller percentage of the population is ‘suffering’ from this or that ailment. Then the real fun begins as they hyperventilate over which medications can be given to which group of people to treat their specific symptoms. Is this a cost cutting exercise?
Why has this latest visit caused so much ire? As many will already know I was diagnosed with Lyme disease last year. It doesn’t exist in Australia, according to the ‘powers that be’ and that creates a bucket load of problems, not least being there are no doctors who have the authority, from the Medical Association, to treat you. Some of the symptoms for this delightful ailment are, ‘flu like’ symptoms. In its lesser aggressive state it can cause inflammation of the joints, especially the knees, (arthritis.) The heart can be affected, (heart failure), Bell’s palsy, meningitis and so on. The arthritis of Lyme disease can look like many other types of inflammatory arthritis and can become chronic. Anxiety and depression occur with an increased rate with people with Lyme disease.
http://www.elenacook.org image from
But it doesn’t exist here so I don’t need to worry. My GP does not recognise that Lyme exists in Australia and therefore I do not have it. I’m not doing terribly well and I need to understand what’s happening. After all, it is my body we are talking about. I’m a good researcher. It’s what I do when something bugs me. I research and my results led me to Fibro. This has been going on for years. I’m listed as a ‘chronic pain’ sufferer. The ‘argument’ is that Chronic Pain is an accepted diagnosis so why do I need to find out if it is Fibro? Simple – I need to know so I can understand what I can do and where I can go to get help.
Under pressure – I was finally told, Yes, I have Fibro. Chronic Pain is Fibro. I cannot have an operation because my spine is Swiss cheese. I have had this for so long it has degenerated too much to do anything with it. Let’s have a Party!
image from opencaremedicalcenter.com
So I now have a generalist who says I have Lyme disease: who isn’t allowed to treat me because the Australian Medical Board has restricted his license. Why – well it doesn’t exist here and he was stupid clever enough to make a ‘you tube’ video advertising his treatment of it. Smart move! I also have a Medical practitioner who says it doesn’t exist so he won’t treat me for it. I have Chronic Pain, or Fibro, or both, or ME/CFS. And they wonder why people get depressed or anxious!
Sarcasm is the final stand for people who are being ignored or not listened to. I shouldn’t need to be as wealthy as Rockefeller to get good health care. I shouldn’t need to go to the UK or US to get medication. I shouldn’t have to wait an additional ten to fifteen years to get medication already approved and in use in those countries.
image from http://www.label-makers.com.au – Is this our future?
Reducing every ailment or disease to an acronym, for convenience, not only depersonalises the situation it also dehumanises those affected. We are not numbers, nor acronyms. We are not our disease or ailment, we are people and should be accorded the dignity that warrants.
I have one final theory – is this a concerted effort of ‘the powers that be’ to introduce eugenics in the population under the guise of ill-health? Now that is a scary thought.
“You can truly value life, when you have looked Death in the eyes and held its hand.”
― Lionel Suggs
Blessings, Susan x
© Susan Jamieson 2014
image from fineartamerica.com
Owls and Orchids 
Opened my eyes a little further! And I understand your predicament a bit better also. Sending you good energy and the hope that someone, somewhere will finally realise that they are treating humans and not a bar code swipe as you walk into a doctors office. Big gentle hug Susan, the love that I send is by far more unconditional than those attitudes by people ‘in charge’, for ‘our’ benefit, are capable of giving. Love and light, Mark x
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Many thanks Mark. I knew I had to write something about it because it is making it too easy for people to be pushed to one side. The entire process of putting everyone with the ‘same’ ailment in one basket is ridiculous because we are individuals and each responds differently – but more than that we each present with different degrees of symptoms.
Anyway – the Irish got out and decided to wag her finger. 🙂
What truly concerns me (conspiracy theory now) is hiow easy it could be to implant chips based on illness or socio economic status…m now that is scary. Have you seen the Matt Damon film Elysium? It seems the idea keeps being regurgitated every so often with a new twist. Good imagination or they hear something we don’t?
Thank you, love and hug greatly appreciated.
Blessings, Susan x
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Wag away Susan! My heart goes out to you, for the frustration must seriously test your sanity, let alone trying to ‘live’ in some normalcy. I put a link below (that you may have seen), that I hope is some stirring of the pot. But I suppose like all things government, please don’t hold your breath while they ‘make’ decisions. But I have to admit, finally, they are beginning to admit to it, even though actually doing something may come under another banner. I hope it will bring some hope that they will finally stick some attitude towards it so that eventually people will be diagnosed properly and given appropriate treatment. Can’t be too hard to test a tick’s poison, check the human response (antibodies) to it, then check that in a patient. Blessings, love and light that the wag has been seen! 🙂
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The little question they slide around is refusing to accept these ticks, and not all the ticks carry the disease, are here in Australia. Worst of all is that the doctors in Lyme acknowledged countries, admit there are as many false positives and false negative results as their are positive results from the testing. The main diagnostic tool is the symptomology, so you can see how easy it is to negate the argument that it is here.
Time will tell. 🙂
Blessings and a tired wagging finger ❤
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It’s very frustrating watching all this from the sidelines too.
If industrial relations was treated with this disdain on a building site, the unions would stop work and blockade the site – this type of behaviour from management (doctors/medical fraternity) would not be tolerated.
However, once someone IS injured from a work injury or anything to do with workers compensation claims, the reverse appears to hold. The unions seem or are powerless to get proper treatment for the people and the push seems to be for the employers and THEIR medics to get the person off the claim list, given a paltry settlement and a ‘no further claims’ exit letter and get rid of them, into the long term chronic pain/illness sufferers vastness, where other doctors can further try to obfuscate and confuse them with indeterminate diagnosis and an alphabet of disorders with a further bewildering range of drugs…
Similarly with the invisible ailments so many are suffering from, the alphabet of the blog. Nobody wants to take responsibility for an opinion and stand by it!
Wouldn’t it be nice if early on, a doctor had said decisively that “THIS is what you have, and THIS is what is required, and TO HELL with the Workers Compensation Boards or whoever else is pushing you around, until you are well again!
I know one lady who would have had and enjoyed, by now, an extra FIFTEEN YEARS of quality life, instead of now blogging about the crappy situation it has put her in! There MUST be a crime in robbing someone of fifteen years of their life!
GREAT post Sweetie, and something that really needed to be said!
Ray XXX
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Hear! Hear! It always comes back to the money. The interesting part is…where are the Dr’s that actually have Lymes Disease as well. Incredible silence on that…but there must be one or two willing to speak out…what do they have to lose. Probably Dr’s compo…as long as they say it is something else.
You guys have probably seen this, but just in case, http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-lyme-disease.htm
Hope it has at least some sanity for someone.
Take care,
Mark
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I’m sure doctors are very well looked after. Then again, I am a cynic. 🙂 Thanks Mark
Susan ❤
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It’s awful the way so many people don’t receive proper medical care because they don’t fit neatly into a category with a certain drug for it. Do you have insurance that covers alternative medicine, like naturopathy or Traditional Chinese Medicine? They treat conditions mainstream medical doesn’t even believe in. I received more help in a few appointments with an acupuncturist than I ever did from my regular doctor. Unfortunately, my insurance no longer covers it. Or anything else, for that matter.
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Because it isn’t recognised finding an alternative therapist who knows how to treat it is very hard. As you say – insurance covers very little these days… is theer a greater plan afoot we knw nothing about?
Susan x
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Rant on Susan, you’ve said what many of us are thinking. I do find it odd that Australia doesn’t acknowledge Lyme, we were hearing about it when I was still in high school and that was quite a long time ago 😉
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As someone said in John Q (film) it is no longer the Hippocratic Oath it is the Hypocritic Oath. Sad isnt it. :0
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