Friday, 22 August 2014

Thin = Healthy

Oh please.

I don't usually consider myself a bad-tempered person. I'm usually pretty reasonable and generally I'm very level and cheerful. Occasionally however like everyone I will see red and then woe betide whatever the butt of my disapproval is. One such example of when I cross the boundary into an out of character temperament is when faced with an assumption that has been cropping up rather a lot lately in all sorts of discussions about chronic illness - that weight at either end of the spectrum is the sole cause of the problem.

OK, stranger. Let's say that I'm prepared to give your hypothesis even a moment's thought. Show me the medical qualifications with which you feel empowered to make such a sweeping statement. Nothing doing? So would you like to explain to me the relevant experiences of ill people which have led you to your false conclusion? The huge breadth of people you would have needed to meet and discuss this with in detail to have any hope of such a broad statement being remotely accurate?


I'll tell you why you're silent. You're one of the ignorant masses who never pause to think beyond whatever Google tells them. You never give any thought to anything beyond the narrow boundaries of what society deems acceptable, and the actions of the mass media which enforce those standards. Bravo, bravo.

My weight has virtually nothing to do with my conditions. Interstitial Cystitis is an inflammation of the bladder lining - please explain to me how my weight whatever it may be could possibly prevent or cause such an affliction? No really, I'm waiting. I'd simply love to hear it. Obviously this is an area of biology and pathology I'm completely oblivious to so go ahead and educate me.

I dare you.

Fibromyalgia affects the joints, muscles and fibrous tissues of the body. Exactly how does my being "thin" stop the aches and stiffness, the sensitivity and weakness? Exactly what could my BMI (a flawed system to be sure) have to do with any of that?

When I first fell ill I lost nearly two stone in weight and I looked awful - there was nothing I could do and I was eating as well as I could with my rebellious digestive system. My explanations never stopped any comments of "You'd feel better if you just ate more" or "There's no point starving yourself to be thin".

(You most certainly are. Image from

Really? REALLY? Just who in the hell do you think you are?

First things first about me - I'm 5'3" and have a small frame. There's nothing I can do to change those two facts, and they define rather a lot when discussing size. I'm reasonably slim, but I work at it. The days of my being able to eat whatever I wanted and metabolise like a racehorse are gone, so I'm well behaved and the amount of exercise I do to keep the Fibromyalgia at bay is an enormous help in this regard.

I'll tell you a secret - I have no idea what I weigh. I don't weigh myself. Aside from if you have a medical reason for monitoring weight, I think it's a bad idea. It just seems too easy for self worth to become wrapped up in the number on the scales.

The heart of the matter is that the number on the scales only shows you one thing - a numerical representation of your relationship with gravity. When last I checked gravity was an infinite resource. Thin people are not wasting their allocation thereof, and bigger people are not *gasp* taking up more of it than they should. I'm fairly sure short of something catastrophic we're not going to run out of gravity.

The weight game is yet another hazard of an illness being "invisible". Weight sadly is visible, and it's all too easy for the ignorant to pin the problem on what they can see. Weight is not simply a matter or how much or how little you eat. I have known people who might eat like the proverbial four-legged herbivore but can't keep weight on because of inflammatory bowel conditions (one example cause), and still others who barely eat anything at all and still balloon in weight as a result of medications they have to take to have any hope of a productive day to day existence. Their weight is the effect of their illness, not the cause.

There is no difference between telling a thin person they should eat more and telling a bigger person to eat less, or exercise more. Either way you are being incredibly rude - whatever anyone else does with their body isn't required to match up with your idea of what to do with yours. In fact, nobody else's body is any of your business. Particularly when in the realm of chronic illness you're also being incredibly ignorant of the myriad of complicating factors which may determine the person's resulting weight - and how dare you presume to judge their eating and exercise habits as a stranger?

More importantly though, why is weight seen to be such a defining characteristic for us? Are "fat" or "skinny" really the most important things we could be as human beings? Are they really the standard by which everything about a person should be judged? Why is it seen as completely fair game to comment and expect no consequence for doing so?

A trick some people never learn is to engage their brain before they open their mouth. So many of us speak in ignorance when we should be quiet and learn, and in situations where we honestly do not have the right to comment.

You often hear this personified as "I'm a straight talker - I say what I think!" as if that's a get out of jail free card for whatever offence could be given by your words. Freedom of speech is not the same as freedom of consequence - and the latter seems to be what people are expecting when they envoke the former.

Happily for those of us less impressed with your behaviour, one day you'll meet someone who talks straight in return and I can guarantee you will not enjoy it in the slightest.

One final thing to remember, and it really sums up all of this post. Not a single one of us has to justify to anyone else the space (however much of it) we occupy in the world, and nor should we ever try to.

(Something to always keep in mind. Image from

Has anyone else been the butt of comments regarding their health and weight in this way? What did you do?

Letting the bee out of my bonnet and wishing you all many spoons xxx

Sunday, 17 August 2014

Like Light to the Flies

This is a little away from my usual topics of choice, but given this is a blog on the internet and I always ask that people are considerate and polite when they comment and discuss on here, I think the commentary has its place on TRB.

I'm sure most of you will have seen in the wake of the death of Robin Williams that his daughter Zelda has ceased to use Twitter and Instagram following attacks on those websites about the death of her father. I could take up a whole post talking about how disgusting it is that anyone in the wake of such a tragedy would tell her that she is the reason her father committed suicide, or worse still send her mocked up photoshop images of his body in a morgue. Reading about this over this week has really left me feeling disapppointed with the world as a whole. The most disappointing factor is that idealistic as I am even I'm not surprised to hear things like this any more.

What prompted this post however was the chorus of responses calling this behaviour "the dark side of the internet", claiming that "this is the way the internet makes people behave".

John Gabriel simplified this apparent phenomenon down into the Greater Internet Douchebag Theory which is illustrated in the image below:

(Image from

I can see where this idea comes from, I really can. If you go on any internet forum you will probably see examples which appear to back this up - the cliquier the forum, the more likely you are to encounter this because moral censure is eradicated by the need to be "of the group". So yes, I can appreciate where this theory comes from.

However, let me stop you there and point out that it is in fact howling bullshit.

Put that pitchfork down, I'm not done yet.

The issue I have with this theory and those comments I illustrated above is that they imply that the internet is a sentient being. It's the internet that produces this behaviour, and by extension the behaviour is the internet's fault. This would suggest that the people engaging in this behaviour are all lost little puppies who would never dream of behaving in this way if it wasn't for the depth of depravity that is the sentient brainwashing internet.

Why does this anger me so much? Because it implies the people themselves are not responsible for their behaviour.

Regardless of the idea (which I agree with) that the combination of anonymity and an audience can bring out the worst in people, you are still ultimately in control. Whether you feel entirely safe in your anonymity and however big an audience you may feel is hanging on your response, you still have the final decision in what you choose to say and how you choose to behave in an online environment. Nobody *makes* you do anything.

This also gives rise to another oft-quoted argument - "You can't/shouldn't judge people by how they behave on the internet - it's not a reflection of who they are in real life."

Oh, I think you'll find I can. The internet in this day and age is a part of real life - it's not a pretend environment. You don't get a new clean slate each time you close your browser. Everything you say is visible to potentially millions of people - even if you delete or amend it later, nobody can "un-see" the original comment.

If you're a horrible person on the internet you're going to have a very hard time convincing me that's not the sort of person you are. Again we're implying with that train of thought that the internet can create behaviours, and I don't believe that is so. Exaggerate? Yes, but you still have the agency to prevent that. Create of its own accord? Absolutely not.

That's the same sort of attitude that leads to "It's just the internet" being offered as an excuse for bullying - and that is equally ridiculous. Bullying is bullying wherever it occurs, and if you engage in bullying behaviour then you are a bully. No ifs, no buts. The internet didn't make you that way - your own actions did.

(It really is that simple. Image from

So, how about we put our big girl pants on and stop making ridiculous excuses for ourselves? It's called owning and taking responsibility for your behaviour - and too many people hide behind the internet as an excuse not to do so.

The horrid behaviour Zelda Williams (and countless others before her) was subjected to was not the "darkness of the internet". It was the darkness of people.

I am off to stick my head in a fantasy book until the disappointment is assuaged with dragons. This is a topic I'm very passionate about, and I would really like to hear people's views on it.

Wishing you all many spoons xxx

Friday, 15 August 2014

"But then you are very small..."

(Tell me about it....

So, things have been happening and as we’ve seen over the last couple of weeks I’ve been too busy ranting about wider issues to really give much thought to me personally.

The short version of my recent problems is that I started to have gynaecology related symptoms again. I have had these flare up before but because I was referred straight from gastroenterology through to gynaecology, the gynaecologist took umbrage at my apparently being “palmed off” on him and refused to offer anything other than “it’s just your bowel”.

As I’m sure other chronic pain patients will recognise things have to usually get a lot worse than normal before I’ll do anything about them. You become accustomed to a certain level of “background” pain over time, so there has to be a fairly sharp spike for a prolonged period before I’ll succumb to seeing the doctor – not a prospect I look forward to. Numerous experiences with disinterested or unhelpful doctors mean I tend to go into appointments somewhat spoiling for a fight.

This time however the doctor was helpful and thorough, so off I went to have ultrasound scans to rule in or out a host of various potential nasties. If you want to find out more about chronic gynaecology issues such as endometriosisand polycystic ovarian syndrome I suggest following the highlighted links to some informative pages.

This sounds relatively straight forward until you factor in the fact me and internal examinations of any kind are not on the best of terms. Even the kind that nurses always say “It might be a little uncomfortable but it won’t hurt” do in fact hurt and generally leave me able to do little else for the day in question. Thinking about it that in itself was probably something of a clue to the problem.

Two ultrasounds later and nothing of concern was to be found. I tend to be a little ambivalent in the face of results like this because on the one hand it’s nice to know what you haven’t got, but at the same time nobody likes being thrown back into the jaws of the assumption that there’s absolutely nothing wrong – you can be fairly sure if something hurts rather a lot then there’s a problem somewhere.

 As I was doing my best (and generally poor) impression of normal walking whilst severely uncomfortable away from the couch, the nurse said “I honestly think it’s because you’re so small.”

(And we all know how well that goes for me...

Um, what?

Now being the towering height of only 5’3” I’ve heard most of the jokes known to humankind about short people, but this was most certainly a new one.

The nurse proceeded to explain that it’s fairly evident from my build and from the scans themselves that my pelvis is very narrow. When you look at me head on you also notice that the vast majority of my diminutive height is in my disproportionately long legs. This means that my torso is very short and all of this amounts to me having a very small abdominal and pelvic region. There’s not a lot of room in there.

The nurse talked through my history and whilst not making a definitive pronouncement said that she felt the symptoms were likely to be my bowel playing up and this pain radiating outward due to the lack of space.

Whilst it’s nice to hear a well thought out explanation of what your body is doing, it’s a little infuriating to hear that this means, short of putting me on a rack, there’s little to be done about the problem. We are most assuredly back to heat, painkillers and Pilates in terms of options, because despite the gluten free diet improving things the problem is still far from gone and a proper solution is looking less and less likely as time goes on.

On an amusing note though, it would appear evolution has somehow managed to create a human too small to be a human properly.  

Darwin, you’re a first class git.

Has anybody else come up against dead ends which can’t be helped? What do you do in this case?

Seeking out some Skele-gro and wishing you all many spoons xxx

Tuesday, 12 August 2014

Carpe Diem

(Dead Poet's Society)

We in the UK woke up this morning to the sad news of the passing of Robin Williams. For the moment pending a full investigation the coroner has given an initial verdict of suicide via asphyxia and Williams’ publicist has confirmed the actor’s long running battle with severe depression.
I will be very clear. I do not suffer with depression – I never have. Some of those close to me do so, but I appreciate this gives me no idea at all how the condition manifests and how it feels to be a sufferer. I don’t want to use this post (or any other) to appropriate anyone else’s problem or indeed talk about something I lack the right and requisite knowledge to tackle correctly.
However, the passing of Robin Williams has served to illustrate the on-going stigma society places on mental illness, particularly in comparison with physical ill health – and that I feel I can talk about successfully. I’ve written about how poorly this is often treated before in A Silence of Three Parts, but I wanted to illustrate something specific here.
Depression by its very nature is a long running, complex and often incurable disease. It shares the same space as many other “invisible” illnesses in that treatment is limited to managing the condition and its symptoms. Often there is no rhyme or reason, and if a person often held to be one of the funniest men on the planet can succumb then it truly illustrates that the disease is indiscriminate and can strike anyone anywhere at any time.
Many will think I’m delving into semantics here and little else, but I ask that you stay with me on this. Semantics are important in the context of how we label and therefore understand the world around us. Our use of words often shows a great deal of the thought process behind such words.
Reading the various reports of Williams’ death this morning, one thing is abundantly clear.
We as a society regard suicide as a choice freely and willingly made. In doing so we completely divorce it from the background leading up to it, and therein I think lies the biggest problem in terms of stigma and misunderstanding.
I’ll explain the context in which I’m criticising that view, before you reach for a pitchfork. Let’s say for example someone had died of a heart attack after a history of heart problems. The heart attack would be regarded as an upsetting but valid complication of the historical underlying condition and in all likelihood nothing would be questioned any further.
Why therefore do we not allow for suicide being a complication of on-going depression?
(The Black dog -

The logic is just as sound in both cases, but as a society we seem to have a huge problem accepting mental ill health to be as genuine and blameless as cancer, heart disease, arthritis or any other physical ailment. In my experience people seek to apportion fault with the sufferer – how many times have you seen “Just think positive!” or “If you just cheered up a bit...” thrown in the face of the genuinely ill?
Saying things like that is seeking to place blame. In saying that a person could help themselves by changing their behaviour you invalidate the idea that the condition exists regardless. Most of us have some small capacity to improve our surroundings in a way that can be helpful to overall health, but that does not make us responsible for the hand we are dealt. Nobody asks to be depressed, in just the same way nobody asks to contract cancer. I most certainly didn’t ask for Petunia to show up either whilst we’re on the subject.
I am venturing into the realms of opinion now, because I can’t call up the ghost of every tragic suicide victim the world over and ask them to corroborate my thoughts for me. Be that as it may, I don’t believe that any individual completely devoid of illness chooses to commit suicide.
Notice how I didn’t add “physical or mental” to that statement? I shouldn’t need to – and this is where my point about semantics comes in. There should be no need to qualify whether an illness is physical or mental – it is simply an illness and that should be enough.
In summary I’d like to ask (if you have the time) that people have a look at my post here. It links up to Dead Poet’s Society and why that film meant so much to me – it’s the only fitting tribute I can offer for Robin Williams’ talent and work. Williams’ character Professor John Keating says in the film that “Words and language can change the world”.
A little kindness and compassion for one another can do that too.

RIP Oh Captain, my captain.

Wishing you all many spoons xxx