Vegans shaming and terrorising non-vegans

Today, I discovered a handy little button on Facebook that enabled me to stop following someone, and still stay friends with them. Why would I need this? Said friend isn't someone I've spent a lot of time with, but I do like him. He's a bit 'alternative' in many ways, but the thing that made me reach fast for that function when I found it is his constant posting of really gory memes and images that are intended to shock and revolt people who eat meat. (oh, and FYI, don't look for examples in this post, because there won't be any)

I have my own food foibles. I'm Jewish. I follow Jewish dietary laws - to an extent. I don't eat treif - i.e. 'forbidden foods', those specifically mentioned in Torah as foods to not eat - and I don't mix my meat and dairy products. I don't go to the extent of purchasing only kosher meat (partly because it's horrendously expensive), and I don't have two separate sets of everything to keep utensils apart. The latter is mostly because Dragon Dad isn't as observant as I am, because he doesn't find it meaningful so wouldn't keep everything neatly in its place, AND any scallop on a restaurant menu has his name on it...apparently. I'm also allergic to chili - which, let me tell you, can be a complete and utter nuisance, since SOMEONE, in their infinite wisdom, started a trend where 'season to taste' appears to now mean add salt, pepper, and CHILI to the dish, and it's not always mentioned on menus, which can have pretty nasty consequences for me. 

I have NO issue with anyone's food choices. My personal thing - as with many things - is that I will respect the choices of others as long as they'll extend me the same courtesy. And that's where it starts to get murky.

There's a largish populist movement that is spreading dietary solutions for a vast array of medical issues - from the common cold through auto-immune diseases to cancer. There have been a rash of 'health bloggers' exposed in recent times, for extreme diets that have been promoted as 'cures' - which they're not - and social media has been the forum for many a war of words in the comments following posts about these bloggers. I wrote a post for Creaky Joints on this, and got a 50/50 mix of support and pillorying.

My own Facebook feed, courtesy of the algorithms that ensure that I will have 'items of interest' given preference based on my activity over the things I may prefer to see, keeps offering up all sorts of things about alternative diets. And I have a few activist friends whose most frequent means of communicating their passion is to post the goriest, most shocking images they can find.

In the wake of America's Thanksgiving holiday - and feasting - there have been all too many posts about the poor turkeys. Today's 'best', that I can still see in my head, is the bucket of bloodied turkey heads. I can't remember the text that was printed over it. 

The thing is, I eat meat. Not a lot of meat, but I do eat it. And fish. Because I believe that a balanced diet of ALL the food groups is the healthiest option for me. I had a period where I was a complete vegetarian - with eggs and dairy included - but with an overactive metabolism, I lost so much weight it was getting dangerous. The rest of my family weren't prepared to go down that road either, and I don't care what anyone says, it's a pain in the tuchos to have to cook multiple meals for one family for EVERY meal.
 
They say, the people who post all this blood and gore, that it's activism. If someone can explain to me how it's effective to post constant blood and gore that most sensible people will choose to stop following one way or another, I'd be grateful. MY response is to block it. So they're not getting any message of value across, to my way of thinking.

It is MY choice to eat the meat that's part of my diet, small component though it may be. It is a vegan or vegetarian's choice to NOT eat that meat. I'm not about to call either of them out for that. Why should I have to have that stuff shoved up my nose? 

What is it about social media that seems to give license to people to operate potentially very differently to the way they might in person?

I do try to source ethically produced meat from small producers where possible. Sometimes I can't - for any number of reasons. And that's MY business. I don't expect to be attacked for that, or for choosing to eat meat in the first place. And I don't think anyone else should be either. 

So, the radical vegans out there need, in my opinion, to remember their manners, and treat others as they would wish to be treated - and get all that blood and gore off their pages. I WILL block those posts from my feed, because - and this may shock... - they are tiresome. They DON'T move me to stop eating meat. They annoy me because all I see is the cheap shock tactic behind them. 

And here is a picture of my cats. Because, as far as I know, very few people eat cats, so they can't possibly be contentious - unless someone wants to take umbrage because I'm being facetious. 

The great tech addiction

So, overnight, my world nearly stopped. Last night, I was chatting with a friend on my iPhone 6. We wrapped up our chat and I put the phone down. About half an hour later I picked it up again, and it was black. Black screen, completely unresponsive... Of course, I panicked. Because, apart from anything else, it's less than a year old and replaced a very long lived iPhone 4 which, when it died, did exactly the same thing. 

Cartoon by Sean D'Souza

So, it's just a phone, right? Argh... How many of us would truly admit that any more? When the iPhone 4 died, I had to face getting a new one - several models on from that, and didn't have the foggiest idea about setting it up - because although I might swank around with a smart phone, and have a recent model laptop, I under utilise their capabilities, and am pretty clueless about what to do if they have any problems crop up. When I bought this iPhone 6, my cousin set it up for me - synching the old one to my laptop (because it turned out we could still do that) and then loading all the information across to the new phone so that it was, effectively, the same phone. Which, for me, made it the easiest adjustment to a new phone - EVER.

An early trip to our local mall and phone provider shop - because it's insured and at the very worst, I knew they'd replace it - and a techie sales assistant who knew a few iPhone tricks, and it seems my phone is alive and well, and was just having a major freeze for no good reason at all. Life crisis averted. 

However, the experience DID push our dependency on technology right up my nose and it was a confronting experience. Uncomfortably so. 

Interestingly - synchronicity being what it is - Dragon Dad and I were having a conversation about another tech phenomenon late yesterday afternoon. He'd been doing taxi duty for an interstate friend who did a fly in fly out for a job interview. Said friend is an internet guru who comes from a marketing background, and is going for a job at a major uni that has campuses all over the country and has no online presence for the students. So there's a ginormous push on to assemble a team and get a functional student portal up ASAP. 

These student portals are a new thing since I was last studying - it was only ten years ago that I completed an MA... At that time, the University of Adelaide gave us a university email account, so we could communicate easily with whoever we needed to, but really, that was about all, in terms of university based technology. The library would email us about overdue books - which I discovered the hard way when it occurred to me that perhaps I should check said email and found the huge list of emails demanding the return of some books I'd forgotten, and the steadily accumulating length of time I'd not be able to borrow books as a consequence...

These days, those portals offer up student timetables, allow for electronic submissions of assignments, text lists, assignment and exam results and goodness knows what else. It occurred to me, and I said this to Dragon Dad, that when you think about time travel stories where contemporary people are dropped back into previous eras, and have to learn to manage with much more basic technologies and ways of doing things, that if you picked up a current uni student and dropped them back 10-15 years into the uni environment then, they'd not have a clue. 

We had to drop hard copies of assignments in. The results were posted on public boards in the buildings that housed particular subjects. Timetables were given out at the beginning of each semester and we were expected to copy them into our university issued diaries and manage our time ourselves. Messages, pre email, were delivered to our pigeon holes in the building where our course was based. Results came penciled on returned assignments and end of semester results were posted on notice boards in the foyer of the building where that subject was based. Basically, managing our own course and attendant tasks was firmly placed on our shoulders. 

I said all of that to Dragon Dad, feeling that the students today have an awful lot just handed to them and managed for them, and perhaps that's one of the contributing factors for the oversized sense of entitlement many of the current generation are attributed with having. He bit my head off, saying that it was awful to have to look for results on a public board, and what would it be like to see a less than wonderful result up against other people's good marks? Well, I had the answer to that - it sucks. Big time. I failed my Psych One Statistics exam absolutely spectacularly. And there was the shameful mark, up there for the world to see. But, until we had that conversation, it was something I'd long forgotten about... It certainly didn't scar me for life. It's just what happened with marks back then and we took it as it came, and dealt with it. We ran around - physically - delivering assignments with moments to spare before the cut off time. We picked up our basic reading lists at lectures, knowing we were expected to build on that by trawling the library shelves in our own time. 

Dragon Dad is very quick to declare that people are soft. He is entirely capable of delivering a huge rant about the current crop of young cyclists he sees when he's out on his bike, with their trendy coordinated gear and expensive bikes, who think they have to race everyone, but then can't pass him when there's a headwind.... They're soft, he says. They don't train properly, he says, because they're not prepared to deal with the pain. And so on. 

I have to say, throughout our whole conversation about the student portals, I was listening to his arguments thinking that if it were cyclists he was talking about, he'd be declaring them soft, the same as he does the young cyclists who are dependent on their computerised gadgets that monitor all their riding stats for them. 

I have no argument about the undoubted convenience of online student portals, and all the things they do. But it concerns me that it's another technological tool that takes a lot of the personal responsibility out of the equation for everyday nuts and bolts at university. There was another article somewhere I saw recently asking readers their opinion on whether there should be mandatory individual tablets for early primary aged children. All this technology, from the outset, bothers me. There are too many basic skills that are being lost because of an insistence that we take the techie option. It reminds me of this cartoon:

Phones conk out, systems go down, electronic files can be corrupted or lost altogether, emails disappear into cyber space - and then we, who are now SO dependent, can't function. How is that a good thing?

New post on Creaky Joints - Brain Fog and Memory Dysfunction

I have a new blog post up on Creaky Joints, which, while I've never intended for The Original Dragon Mother to have a focus on rheumatoid arthritis, there's been enough content here in recent months where it has featured that if I've written a post for Creaky Joints that is about something that affects my every day life at a personal level, I'll bring it here. And this one does, as it's about a phenomenon that is common to many people with chronic illnesses, especially when those illnesses create ongoing pain, and it impacts at all levels. For instance, the last 24 hours have seen me manage some epic fails - which is difficult for me to cope with - and I can put them all down to the impact of this particular product of RA. 

 

It's called brain fog, and while that sounds funny, the reality can be anything but. You can read the full post HERE.

October - taking stock...

Mrs Woog - WHERE would I be without you some days...? I've had a huge list of writing to dos, and top of the list has been paid work, so that had to come first. now I'm left with a backlog of blogging that has to be done. So, to kick start that, I'm taking the 'easy' way out and pinching this idea from Mrs Woog again - I did one of these a while back and found it to be an interesting exercise. Feel free to pinch it from me, and also to drop some of your stuff from the list into the comments - sharing is caring, and all that stuff...you know...!

Making: A new dress for the first time in absolutely forever. It's cut out and ready to go.
Cooking: Lots of different vegetable dishes - tired of salads all the time.
Drinking: Monkey 47 Dry Gin with Fevertree tonic. AWESOME.
Reading: Second Half First, Drusilla Modjeska. Actually, just finished it, now going back and rereading bits. Look for a review on Books Anonymous soon...
Wanting: More new books by Drusilla Modjeska, and to meet her again (bucket list item).
Looking: At my list of things to do - I wish someone could explain to me how lists just keep growing...
Playing: Scrabble on Facebook! So much fun.
Deciding: That I really do need to start de-cluttering instead of just thinking about it.
Wishing: That the de-cluttering fairies would come and do their magic so I don't have to actually DO the de-cluttering!
Enjoying: Writing blog posts where I don’t really have to think to hard, like this one! Thanks Mrs Woog! (Stole this response too...)
Waiting: To move to Melbourne - been waiting for a year now...it's getting old.
Liking: Balmy days with a crisp breeze.
Wondering: How my eldest will go in his first full length triathlon this weekend at Noosa.
Loving: Dragon Dad. Yeah, I know...mushy moment.
Pondering: All sorts of weirdly existential things that I can't put neatly into a line or two.
Considering: Different ways to build Dragon Mother...
Buying: Books.
Watching: The new season of The Good Wife, and enjoying the change of pace.
Hoping: The games will stop and Dragon Dad will be able to move the business forward to the next stage without any more of the turkey cock posturing that's going on...
Marvelling: That the road toll isn't considerably higher, given some of the stupid things I've seen people doing on the road lately.
Cringing: The bright young things with their bottoms hanging out of too short shorts - HOW is that attractive?
Questioning: Why so many people I know seem to be going through such a hard time lately.
Smelling: Freshly mown grass - they must have just done the lawns in the park across the road.
Wearing: Best $100 I've spent in a long time: THIS
Following: SciBabe - new Facebook page that pokes at all the 'woo' out there - the anti vaxxers, paleo nuts, etc... Brilliant - sarcastic satire.
Noticing: How much thinner my hair is getting, and that the grey hairs aren't blending so much into the natural streaks as much as making a definite statement...
Knowing: The hair loss is the bloody disease and accompanying drugs, and I can't stop it.
Thinking: I really need to clear my desk - it's seriously messy.
Admiring: The spirit I see in so many people fighting serious illness.
Sorting: Books - they're all over the house again. I swear they have legs...until it's time to get back to the shelves...
Getting: Very tired of being sick and needing to be MORE inspired by the fighting spirit of other people with chronic disease so I can find my mojo again.
Coveting: More of the range from the boutique at Double Bay I love...
Disliking: Getting in the car after the stepson has driven it and being blasted out through the back window by the volume of the radio!
Opening: The front door which the stepson keeps dead bolting when he comes in late - heaven help that we have a night time emergency!
Giggling: At the antics of my cats - they're good for a few laughs every day!

Feeling: Weary. The disease seems to be changing again and it's wearing. Either that, or the drugs aren't working any more...

Snacking: Grissini - NOM!
Helping: A few people I know who are battling at the moment - at least, I hope I'm helping!
Hearing: Lots of music I used to play in orchestras when I played French Horn - I miss it.

Needing: A HOLIDAY! Seriously - it's been two years since Dragon Dad and I last got away.

I remember, last time I did a post like this, finding it an interesting process, and being surprised how long it actually takes to work through a list like this! I'll be interested to hear from any of my readers if they do one - and what it might look like...

Growing out of tantrums

Cartoon by Basley

Today, I caught up - on the phone - with an old friend that I've not spoken to in ages. Way too long. She's known my kids since they were small, so there were lots of questions and fillings in about where they're at and what they're doing these days. And also a lot of reminiscing about different stages we went through, the kids and I, and the involvement she had with them - an un-asked for loan helped me get No.1 out of the school where he was unhappy and into the university school for his final year, and that couldn't have happened without her help. 

She made me realise, in the telling, that if anyone asked me for my parenting philosophy - which I'd not really considered in any containable way - I'd have to come down to it being all about logic. This wasn't something calculated. Definitely not something I sat down and thought about before I put it into action. It was something I arrived at by accident, often when I had my back hardest against the wall when they were trying something on and I was desperate. 

Logic takes a lot of the angst out of dealing with tough situations. Allowing for the fact that most kids will keep arguing long after it's sensible when they're trying to prove a point or really want something, it also robs them of fodder for most arguments. 

For instance, No.2 was a hard nut to crack with acting out. Unlike No.1, who's a bit of a control freak, No.2, when his dander was up, really didn't care what anyone thought, so was eminently capable of acting out no matter where we were. The horrors of the public toddler tantrum are all too well known to most parents, and we had more than our fair share of those. I did walk away and leave him writhing and screaming on the floor in supermarkets when he lost the plot - many times. I endured the 'bad mother' glares that were shot at me at point blank range by the holier than thou bystanders too. The reality was, as long as No.2 had me engaged, he was going to keep going - while his vocal cords lasted! Walking away becomes the only defence. There comes a point though, when that all changes. 

I remember the occasion - in yet another supermarket - when he lost the plot over something - what it was, I can't remember... He must have been 9 or 10 by then. I was aware of the looks - hard not to be. But I realised that the condemnation wasn't being directed at me. It was landing fair and square on HIM. I had an epiphany that day, and had the presence of mind to deliver it to him. Speaking VERY quietly - because that's all they hear when they're sounding off and kicking the trolley - I got very close to his face and informed him that if he thought he could shame me into doing what he wanted by chucking a tantrum in the supermarket then he needed to do a very fast rethink. He wasn't getting ANY sympathy from passers by, because I was getting all of that. He was too big for me to be blamed for his bad behaviour at that stage. He was clearly old enough to know much better. Having told him that, I grabbed the trolley and moved on. He was VERY shocked. I remember that. He shut up fast too, and scuttled after me. 

Did it stop the tantrums? Not straight away. He was too much in the habit of them, and too darned stubborn to give them up straight away. But reminding him that he was creating a situation that got ME a lot of sympathy, while he gained nothing, did cut them short and slowly they lessened. It got so that I could shoot him the death stare - Dragon Dad calls it my 'school teacher look' - and he'd swallow down whatever was about to erupt. 

Cause and effect. Consequences. Hit them with logic. It's really hard to argue against clear logic. 

You want a note for the teacher to excuse the homework not having been done? Really? And WHY wasn't it done? Oh, that's right, you decided, despite reminders, that playing cricket with the neighbourhood kids, followed by mucking around in your room instead of just getting it done was a better option. You'll get into trouble without a note? I'm sure you will...how is that MY problem? It's not my problem, it's your problem. YOU didn't do the homework. I didn't do anything to stop you doing it... YOU made that decision. So YOU need to tell the teacher and deal with whatever she decides is an appropriate consequence. That's not fair? HOW is that not fair? YOUR homework, YOUR decision, YOUR consequence. 

Logic. It's a beautiful thing. 

#RABlog Week: Day 7 RA Blogs I read

It's the last day of the #RABlog Week event. I think I'm going to miss it... It's been something of an effort to post each day - something I rarely do - but at the same time, I've enjoyed digging around where I'm at on different aspects of the day to day aspect of living with RA. It's also been amazing reading posts by other bloggers who are participating. To those of you who have stopped by and read my posts - thank you! Thank you for spending time here. And to those of you who have left comments, thank you so much for your feedback!

This last post is about other RA blogs I have read. Some have stuck in my mind, some I've identified strongly with, some not so much. One thing that's been a stand out for me has been the general tone of positivity in the posts I've read. So much courage, so many people with fantastic attitudes, so much humour, and so little self pity. It's been uplifting and encouraging to feel that, in the face of so many stories of such difficulty and challenges. 

So, particular bloggers...

I've been following Arthritic Chick for some time. The internet was in its infancy when I was first diagnosed, and certainly, there was no social media. When it all changed for me over the last few years, I went online to find resources - particularly about biologics. I found AC's blog and spent a lot of time plowing through it. I love that she's such a fighter, and that she's local, so the information about the medical system was relevant for me. We're now good friends, and that's something I treasure. We encouraged each other a lot through this week of blogging.

I found Lene Andersen's blog about twelve months ago, I think - around the time I became part of an Australian online support group. Her story is so different to mine - although, we could all say that about each other, given the vagaries of the disease. But again, I found someone who was so articulate, such a fighter, and so busy finding ways around the disease to keep living! It's been great reading Lene's posts this week, and hearing what she had to say to the daily prompts. 

A new one I enjoyed this week was Kat Elton's Blog - I really loved the exercise post. AC and I keep pushing exercise in the support group we both belong to - sometimes we get howled down, sometimes we get people responding positively...it's a sometimes fraught topic. I loved Kat's tone in that post.

I've also enjoyed 'meeting' Lawrence 'Rick' Phillips - after having his emails in my inbox! I take my hat off to you, Rick, for coordinating this event, and contributing your own posts as well. I loved reading your I feel supported post - you and I were the only ones to play with that wild card, I think and wrote such very different posts!

I think those differences and similarities happening simultaneously in so many of the posts I read were an integral part of the richness of this experience - both writing and reading through this week. There were other posts I read, but I can't remember whose they were, because brain fog! AND, my head will NOT make lists. It's been great - and I hope it happens again next year. If so, I will definitely be there...

#RABlog Week: Post No.6 On support...

Today's prompt:

Today's topic was actually about onset stories - how and when our RA started, things that happened, and so on. However, I've written two posts on that, both with slightly different foci - one here on the blog, which you can read HERE, and the other for Creaky Joints, which you can read HERE. So, I'm going with one of the wild card options instead:

I feel supported - so many times we need support. When do you really feel supported? What do others do to help you feel supported. What is the main support they offer?

Support is a many faceted thing, and something that, for a person with a chronic illness, can feel more than a little bit fraught. I'm a very independent person. I always have been, but it wasn't until I got sick and started needing help with various things that I realised just how independent I am. It burns to have to ask for help - I really struggle with it. Part of that comes from having spent so much of my adult life single - there was no one to ask. My kids learned to pull their weight around the house, and accept that sometimes we couldn't do things because I wasn't well enough, but I don't know that I'd label that 'support' exactly - besides, that wasn't their job.

These days, I have a wonderful partner who is incredibly supportive. It's in his nature - it's not something special he puts on for me because I'm not well. He's supportive of people generally. That doesn't mean he always gets it right though. He's an archetypal alpha male - so he knows stuff... He not only knows stuff, he knows it better than anyone else. That can be something of an issue at times. He sometimes second guesses me, forgetting that over twenty three years, I've had quite some experience developing strategies to get things done. I may look like I'm not managing to finish a particular activity because I'm on the couch and there's still stuff everywhere. What's actually happening is that I've divided the task up into stages and I've built in rest periods and he's walked in on one of those. It doesn't mean he has to rush around finishing everything because, *obviously* I can't manage to finish it myself! Sometimes too, he makes an executive decision that we won't do a particular thing because he decides it'll be too hard for me to manage. That gets right up my nose - it's no one's place to decide what I can do except mine. It's plain arrogant to make decisions for other people, and I told him that when we talked this out recently. To his credit, he got it, and apologised. I know he struggles with it still, because he wants to help, but he's having to learn to stand back and wait for me to ask.

I think that's probably the worst aspect of what happens for a lot of us. People mean well - I know they do. But they make assumptions that aren't theirs to make. I had a conversation with a friend recently about supermarket shopping. On bad days, she and I both use the trolley as a walking aid - we look 'normal' leaning on a trolley, rather than being younger women (obviously not in our dotage yet!) hobbling on walking sticks. She'd had an experience shopping with a friend who was 'helping' by pushing the trolley for her...refused to give it up because, NO, it was more helpful if my friend didn't have to manage the trolley. My friend needed the trolley for support to walk the supermarket...but nothing she said seemed to go in... The real issue was that the friend wasn't listening. My friend's actual needs weren't being heard. That feels just awful - and you don't have to be sick to have an experience like that.

One of the most supportive people I have in my corner is my rheumatologist. I got so lucky when I ended up with him. He is amazing. I saw him last week for a follow up visit after an MRI, and we had the most extraordinary conversation, which keeps coming back to me. He started by telling me my MRI pics were 'spectacular'. That's actually NOT something I wanted to hear - because it pointed to the severity of the issue. So he sorted out a couple of referrals for me and another follow up appointment, and then said to me that I was a complex case. That he could understand that in the past, I'd have had difficulty being heard by doctors and other medical personnel. That I'd have struggled to have them take me seriously - because my presentation isn't straightforward by a long way, and some of the side issues are pretty left field. Then he said to me that he wanted me to know that he was listening to me, that he'd always listen. 

He has a different level or awareness than any other doctor I've had. I spent two weeks in hospital when the disease lost the plot. My partner had to be overseas for business during part of that time - it was unavoidable and not moveable. A friend came from interstate to be there and came in every day, but had to leave before my partner came home. She left on the Saturday of the middle weekend. My son had been dashing in each day - sometimes very early in the morning - sneaking past the nurses because it was way ahead of visiting hours - or quite late. I was quite unprepared, on the Sunday afternoon to see my rheumatologist's head come around the curtains. I was gobsmacked and asked him what he was doing there - and why wasn't he with his children...? He told me that he knew my partner was still away, and that my friend had had to go home again, and he wasn't sure if I'd have anyone to visit me that day, so he just thought he'd pop in... He came to the hospital JUST to visit me. He is something else, that man.

It can be tricky with friends. Our friends have their own lives, as we do, and they're not as tangled up in ours the way family members can be. At the same time, they can sometimes manage to be a bit more objective than family members. Some of my friends are great - they ask, and they listen. I had one I was supposed to meet up with after a long time of not seeing each other, and on the morning of the day we'd booked, she called me sounding like a dead thing. She had the most filthy cold, and was calling to check whether we should get together or not - having remembered I'd said something about being more vulnerable to bugs and viruses. So, we cancelled. Because there's no way I could have been in the same place as her without risk, due to being immune-suppressed because of the drugs I take. She's the same friend who carted me around a string of antique shops hunting a really classy walking stick - because I truly hate the one I have from the chemist. It's black and plain - but it's a chemist stick - an 'aid', and it makes me feel like I need it. What I want, if I have to use a stick, is something so unbelievably classy and outrageous, that I *could* be using it just because it's so cool...then maybe I won't feel so bad about having to use it - my friend understood that too, and gave up a day to take me hunting.

I have other friends that don't really understand. One who, if I have to cancel a date, gets difficult, saying it would be good for me in myself if I got out. That's as maybe, but if I DO have to cancel, it's because, physically I'm really not doing well, and pushing it any further by keeping the date, is potentially going to trigger a big flare that could put me behind even more. I understand her disappointment - I'M disappointed too...I hate having to cancel something I've been looking forward to doing. Having to placate someone who doesn't get it on top of that disappointment makes it that much worse. 

I'm not much of a 'joiner' - I don't belong to groups much. Online support groups are something that have grown exponentially with the internet and social networking. They can be enormously useful for sharing information and support. However, they can also be hotbeds of competition and aggression. I have to admit, that shocked me. I ended up cutting back to one local group that we keep relatively small, and is one of the 'healthiest' online environments I know of. In other places I've seen people one-upping each other with symptoms and disease severity, taking people down if they appear to not be as sick as others, and other bad behaviour - because that's what it is. And it's NOT support. I think it comes down to one of my mantras - don't assume. When you're online, you can't know what's going on behind the stuff you see in posts and comments because you're not interacting directly. There's a remove and a sense of anonymity when we're online and that's something I have to keep remembering, because it appears to give some people license to behave badly. If we run into that when we're really struggling, it can be incredibly destructive.

Being truly supportive comes down to a few simple things - whether you're trying to be supportive of someone who's sick, or not. These are in the first person, but obviously can be adapted.

• Don't impose what YOU think is support. Be respectful of me and ASK.
• Listen to the answer - really listen. One of the hardest things I struggle with is being heard - don't just ask, hear and answer and go ahead doing what you intended to in the first place - listen to exactly what I said when I answered you about what would be most helpful.
• Lose the general 'let me know if there's anything I can do' thing. Most of us find it quite difficult to ask for help, for a whole lot of different reasons. Be specific about what you can offer. If you're able to offer to drive me to an appointment if I need it, let me know that that's what's on offer so I know to call you and not someone else if I need to be driven somewhere.
• Don't prevaricate - if I ask, and you have a genuine reason that you can't help that day, just say so. Don't make excuses - a simple, "I'm sorry, I'm already committed for that time" is absolutely fine. You don't have to justify yourself to me. And I need to be able to get on with calling someone else. 
• Most importantly, allow me to make my own decisions about what I can and can't do. Don't ever assume. I may fall flat on my face - and I have. But that's for me to work out. 

It's not easy living with a chronic illness - and that's not to play the victim card, it just isn't. Having to care take others around the whole support issue is an added stress that just isn't necessary. It's one of the things that will stop me asking, if I think it'll land me in one of those difficult conversations. If you want to help, great, but think about what that really means. I don't need people to make allowances for me, as if I'm deficient - because I'm not.