Monday, 14 May 2012

Can we leave the drama for The Bold and The Beautiful?

Wee bit of a ranty post ahead: you've been warned.

Being chronically ill is hard. Unless you've been unlucky enough to sucked into the vortex, it's hard to explain just what a struggle it can be at times. Being ill 24/7 for years on end takes it's toll physically, psychologically, socially and emotionally. It is unrelenting. All of us who tread the path know this and we know just how hard we have to work to maintain a sense of self and happiness along the way. It doesn't even matter what's your poison. We are united by the simple fact that this shit is hard.

Support is vital. We look for it from our loved ones, but often it is only with others treading the same path that we can find true support. There is a shared knowledge that doesn't need to be spoken or explained. Support groups and forums have popped up everywhere. The advent of FaceBook and Twitter have allowed for the development of communities that span the globe. Got a rare or obscure disorder? Don't worry, there is a guy in Azerbaijan who also has it and thanks to the wonders of the internet you can commiserate and laugh over the joys and challenges of life with your particular issue.

As patients we are frequently vulnerable and exhausted. Being sick, especially when you are new to the game, can be a very scary place. We need support and a safe place to discuss the often confronting physical and emotional issues that we deal with. Online support groups and forums fill an important void in the medical system, where housebound and often geographically distant people can come together to find knowledge and support. They have many fantastic attributes.

But there has been a perceptible change in the functioning of many communities. Maybe it was always there, but these days it's become far more visible thanks to the immediacy and inherent anonymity of the internet.

Drama. 

Drama in the form of illness oneupmanship as so elegantly described by Carly Findlay over at Tune Into Radio Carly. Where patients try to out-sick one another. And the winner is in truth the loser, not that the participants can see this. 

Drama in the form of judgement (check out Claire Foust Martin's post over at Stop POTS Virginia). Judgement in the way you handle your illness, your treatment choices, or your philosophies. Patients attacking patients, carers attacking carers, it can be truly disheartening.

What is being achieved by this? Why as patients aren't we calling each other out on this bullshit?

As patients, or carers, many of us have seen the worst of the medical system. A system often populated with doctors who either don't understand, are dismissive or in some cases, are outright hostile. A system where there is a lack of research in under-recognised disorders, like Dysautonomia. A system not set up to deal with complex and chronic conditions. Where money talks and where treatment and diagnostic options are often non-existent.

Many have seen the worst of those who we thought were friends or family. A lack of understanding and judgement. People who walk away, or talk behind our backs. People who leave us high and dry when we need them most.

And now we are set at tearing ourselves apart piece by piece, because we don't agree with what someone else says or their treatment choices. 

STOP IT!!!!!

The reality is that my treatment choices don't affect anyone else. Nor do anyone else's affect mine. As individuals we have the right to make choices that suit us based on our individual presentations, beliefs and life circumstances.

If a fellow patient chooses traditional Western medicine to treat their symptoms, that's okay.
If a fellow patient chooses alternative or complimentary medicines to treat their symptoms, that's okay.
If a fellow patient chooses a variety of methods, or no methods, or chooses to stick crystals up their arse and bark at the moon, THAT'S OKAY.
I may not agree with their choice, but I'll sure as hell support their right to choose.

It doesn't affect me and it doesn't affect anyone else but that one person. Why are we so concerned with what others are doing? And more importantly why are we so invested in telling them they are wrong?

It is possible to suggest alternatives, to point out concerns with a particular treatment, to disagree and choose different paths, in a respectful manner. Disagreement is a good thing as it makes us all re-evaluate our positions. It may open our eyes up to alternatives we've never considered or it may reinforce our original position. But do it with respect.

Share the information and let others decide if they want to follow it up.

Do not send multiple emails demanding the person tries a particular treatment.
Do not decide that their reluctance or choice not to take up that treatment means that they either don't want to get well, or aren't as sick as they 'claim'.
Do not tear them a new one on a thread because they disagree. You may be right, but your method and tone serve only to drive people away.

For example: Just because you don't believe in or use Western medicines doesn't give you the right to write "maybe when some of you have kidney failure you'll wish you hadn't take some of them" and it sure as hell doesn't sell your own position. It smacks of judgement and a lack of compassion. Concern for the well being of fellow patients is an honourable trait, but can be written with a very different and supportive tone. (This isn't a post for or against any particular treatment option. I've seen equally callous responses to those who follow a more alternative path. In either case, it is appalling behaviour from adults).

We are better than this.

If you make an informed choice in the form of humour, religion, diet, exercise, medications, meditation, supplements......or any combination of things to deal with your illness that's okay, and no one has the right to tell you otherwise. 

We all have the right to choose what works for us.

Aretha was onto something when she sang about R.E.S.P.E.C.T, because that's what it is all about. 

Life is too short and this shit is too hard to add this level of drama to our lives. It is unnecessary and it is something we can choose to stop.

Support does not require agreement. And difference doesn't instantly equal bad. And manners cost absolutely nothing.

Being ill isn't a competition and no one has all the answers. But what we can do is support each other through the tough times. We can provide a shoulder for those in need, laugh at the absurdity of life and rejoice in the small successes we can achieve. That is a far more rewarding and positive way to spend what little energy reserves we have. We shouldn't need to add a Code of Conduct at the top of a group that says: act like an adult, use your manners and don't be a dick.

When we leave this world, we all need to decide what we want as our legacy. Do you want to be Right at any cost, or do you want to know that you made even a small piece of the world a more compassionate and better place.

Time to actively bring back the support to support groups. Six years down the track I am still friends with people who I met in online support groups early in the piece. They have made this experience bearable and they are family. I want others to have that experience. That gift. Because I know how important it is.

So if your name isn't Ridge or Brooke, and you haven't accidentally slept with your husband's best friend, who is really your long lost half-brother/cousin/uncle/dog walker/mysterious European prince. After eating hallucinogenic berries whilst castaway on a desert island, following a mysterious yachting accident, set up be said royal, dog walking, blood relative, leave the drama for the TV soaps.

Michelle:)

36 comments:

  1. You are so damn funny. I don't know how you manage to write about these things and be so freaking hilarious. You're talented. Any illness is hard, I don't know what these people are thinking... I feel like crap so I'm going to act like crap and treat everyone else like crap? Great post. Couldn't have said it better myself x

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    1. Thanks babe :) I don't get it either. When I first got sick and started on the forums it would happen occasionally, but for the most part people were supportive. Now days it sadly seems to happen far more often.

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  2. I so agree,and having been a bit absent on the internet lately,have missed most of the drama, thank goodness. How completely disheartening, shattering even to get online with a SUPPORT group,trying to find some little spot of calmness in this wind tossed ocean that is Chronic Illness only to become the subject of bullying or belittling. To be tossed out of a group due to a view or because you disagree. To once again feel that feeling of having people reject you...gutting. People we need each other. Our world is so very very harsh. So hard. We all know just how hard it is. So reach out and help, dont take out your pain and illness, your rage at the world on each other. We need to be that safe harbor for each other, always. We can kindly agree to disagree, then ask, "so how are you today?" Michelles right. We all need LESS drama in our lives, lets just love each other.

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    1. Sing it sista! Damn, I wish there was a high five button on here :)

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  3. That is one of the best post I have read.We all need each other for support.There is no RIGHT treatment or should I say miracle cure.Whatever makes us feel better is our right treatment.thanks for putting into word how I also feel.MEAN PEOPLE SUCK and have no business opening their narrow minds to us.Have a fantastic - pain free day.

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    1. Thanks Anon. There are enough people to tear us down or tell us what we 'should' do, we need a safe place of support. We are all in this together and together is how we'll make it through.

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  4. I absolutely agree and the line that manners cost us nothing resonates the most with me. I do hope we can share our hard won experiences and technical knowledge without hurting each other. Really nice post. thank you. "Dizzy Jeff"

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    1. Thanks Dizzy Jeff. We have so much to share with each other, I just wish some people would realise we can share without the drama. Not everyone will agree, but as long as there is respect it really doesn't matter for the most part. Disagreement and different ideas can be really useful when undertaken in a supportive environment.

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  5. LOVE this! You are so very right! I call this one uping! No need to one up anyone! We all got talents, and we all got faults. Opinions are like butt holes. Everyone has one. Some are stinky, and best left to yourself. To not be shared until you are in the privacy of your home when you are all "alone". :)Love ya. If it's drama free it's for me!!!!!

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    1. "Opinions are like butt holes. Everyone has one" love this :)

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  6. Hear, hear! Or is that here, here? As in, here in the U.S. where I live, people seem to be particularly snarky lately on chronic illness sites. The most popular Western treatment for one of my (numerous) ailments is a medication that actually CAUSED me to get sick in the first place. It gave me permanent brain damage. Yet my alternative treatments aren't considered "real" medicine. Thanks for calling the truce! And thanks for providing the very best treatment of all, humor!

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    1. The snark metre has increased over the last few years. I'm not sure why, but I do find it sad. I think we do need to have a bit of a truce, or maybe just breathe before we respond to something. Add in the lack of tone and brain fog and sometimes even an innocent comment on a forum can start a wildfire. Support, love and compassion is what we need, there are enough other people who will tell us we're crap without hearing it on a 'support' group.

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  7. This is a brilliant post Michelle. You have written your argument so eloquently. I think you're right - the anonymity of the Internet has meant criticism is more common. However I also think as you wrote, criticism gets confused with disagreement.
    Really well written - and thanks for the mention.

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    1. Thanks Carly. I think the support groups are in a sense just a representation of what is going on in the wider media/community. Looking at some of the nastiness that has been occurring on and about blogs lately, it definitely seems to be on the increase.

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  8. Michelle, as you know I tend to write long comments not this time. Every word you wrote is brilliant and every word in the linked blog post the same. I just want to thank you for taking the time to write this post. My last word today is R.E.S.P.E.C.T.
    x

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  9. Superb post, Michelle. I found myself nodding in agreement through much of it and very much appreciate that put these thoughts down on (virtual) paper. I sense that many of us who duke it out with chronic illness day in and day out have echoed your feelings time and time again.

    Thank you very much for your lovely comment on my vintage outfit post this week. I'd love to see you 1930s rose brooch any time (I have 3 or 4 rose brooches and wear them all often).

    Wishing you a positive day, dear lady!
    Jessica

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    1. Thanks Jessica. For all the disagreement that occurs I do think at heart we all have similar thoughts, needs and experiences. I just wish that some people could see that.

      Will have to photograph my broach and Tweet you. My husband surprised me with a lovely 1930c green bakelite bracelet the other day I'll send you a picture of that too. So if you get a tweet from @rustyhoe, that's me :)

      Hope you're having a lovely Summer's day
      Michelle :)

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  10. Excellent post Michelle, I have left groups due to having nasty posts after I have asked an honest question about my own health - not anyone elses.

    People do like to hide behind an on line personna and if you dont agree with them heaven help you.

    Ive also found it isnt just your condition thats questioned but your religious beliefs also. On some pages / forums if you dont end ech post with some sort of bible refernce your seen as the anti christ - if you only believed / believed more / prayed harder you would be cured.

    Thanks
    Rach

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    1. I've left groups too and I know many others who have as well. It's sad when it comes to that. The religious angle is a strange one. I have many friends who are deeply religious, but don't have a problem with me not being religious in the slightest, just as I don't have a problem with their religious beliefs. Yet I've had strangers who are much less understanding. Can be frustrating at times.

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    2. Wow. As you are admin of POTS group who recently removed a bunch of people just for disagreeing with admin, creating a drama in itself, it's awfully ironic that you like this post Rachel.

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  11. heh. my own family has tried that... *you know that god didn't create this so it isn't real. you just need to believe that again... this isn't real.*

    the hell it's not.

    and i will NOT get the eff better with a mother effing liver cleanse.

    and each time i hear *liver cleanse* at this point it makes me want to reach through the phone and pull their effing livers out through their right nostril.

    *sigh*
    angry day. sorry.

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    1. Don't apologise Mel. Sometimes you have to get it out or you'll implode. (hugs)

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  12. Yeah, the old religion ploy. I am too familiar with that. I have been told that the reason I am still unwell is that I didn't go to a specific faith healer. And that I haven't prayed hard enough for a cure. Have they considered that maybe my creator intends for me to be ill? And to find peace despite my ailments, which I have done.

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    1. It's a hard one and smacks of little in the way of compassion, but bucket loads of judgement. Faith is such an individual pursuit and we all see and express it differently, it drives me a wee bit batty when people tell me what to believe, or that my lack of faith (in their eyes) is why I'm sick.

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  13. As always, this is hilarious and well written and needed to be said. I am going to borrow your sample "don't be a dick" Code of Conduct for the FB support group I run. Thanks!

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    1. "Don't be a dick" is pithy and pretty much sums it all up ;)

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  14. Sigh. People can be so bloody HUMAN sometimes can't they. And I don't meant that in a positive sense. It seems like no matter what you do, suffer, wear, talk or eat, there will be someone there to judge you for it. Damn us all to hell!

    Penny Dreadful Vintage

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    1. So true. It's not isolated to forums, or blogs etc. It's pervasive in society these days. Seems we are all so busy pointing out the faults of others, we seem to forget to check ourselves for our own.

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  15. Hi,

    I want to (respectfully!) disagree with your statement that one persons treatment choice doesn't affect anyone else. When dealing with a misunderstood condition such as POTS, one of the problems is often the fact that the loudest voices are often those who have recovered. While i feel for anyone who must endure the journey associated with any chronic illness, if those who have tried some random, alternative, faith or as you so eloqently suggest "crystals up the arse!" treatment and this has helped them - to the point where they are able to return into the wider community - if they then start telling people that they had X but they tried "..." and they were all fixed this DOES affect other pople still struggling with condition X.

    People are notorious for always thinking their problems are not only more severe than anyone else's (the self-reference effect) but also that one person's problems are representative of everyone else's with that label - thereby if person X gets better from treament Y, then treament Y should work for all people with that condition - and it's not far from this (unfortunately) to the old "if you DON'T try treatment Y then you must not WANT to get better".

    I agree with you entirely about most of what you write - and sadly this kind of thing goes well beyond just POTS. But how people should behave and think and how we actually do behave and think are sadly, very different things. I too believe in freedom of choice - BUT to sum up (!) I also believe each of us has a responsibility if we are fortunate enough to find any helpful treatment to ALWAYS qualify that just because something worked for me, it doesn't mean it will work for you/other people. I know it SHOULD go without saying, but it doesn't.

    With wishings of good health and peace for all :)

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    1. Hi Anon, I think in a sense we actually agree. There is a way to disseminate information and I think some people become quite evangelical about certain treatments and fail to see the bigger picture. POTS is a primary example of this given the multiple causes which means appropriate treatments vary greatly. I do think the line between opinion and medical fact is crossed, way too frequently (it's one of the reasons I always state that my posts eg the DDAVP one, are my personal experience and people need to chat with their doc). In a sense we need to police ourselves on the boards with respect to this. I agree that it is hard, especially for the newly diagnosed, to weigh up information about treatments that have worked for someone else. Lets face it, we are all desperate to be well again. Tis a complex area, especially when many groups don't have a strong or dedicated administrative presence to keep things in check.

      Thanks for taking the time to comment and please feel free to disagree any time. Differing opinions definitley aid in the discussion. :)

      Hope you are well :)

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  16. On another forum, I've been accused of not wanting to get well because I haven't wanted to visit some practioner and have a vial full of something waved over my stomach while a laser light is aimed at it. If that was helping that person than great for her. But I didn't want to go there and was judged as 'wanting to be sick.' We had actually had a good relationship before that with many experiences in common so I did miss that persons imput for a while. But I wasn't going to spend what little amount of money I had, and what little energy I sometimes have, on what I felt would not do me any good.

    deb

    blue

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    1. Sorry you had that experience Deb. I get a lot of 'helpful' emails from people who tell me the things, alternative and conventional, I need to do to get better (coffee enemas are my 'favourite'). Most will say it once and then move on but some have told me my reluctance meant I wanted to stay unwell or that I'm not as ill as I say, some will send multiple emails to this effect. For the most part I can block it out but I know for some they feel very bullied in the process. Share your idea, then leave it up to the person to follow it up if they want. It's not hard (hugs)

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  17. I AM TAKING A DAY AT A TIME, A GATHERER, TRYING EVERYDAY TO RELEARN WHAT IS IMPORTANT. I AM SO THANKFUL FOR WHAT YOU AND OTHERS ARE WILLING TO SHARE. THE ILLNESS BRINGS THIS QUOTE TO THE FOR FRONT FOR ME. WHAT DOES NOT KILL ME, WILL MAKE ME STRONGER. THIS IS MY HOPE ANYWAY.THERE ARE ALOT OF THINGS WE CHOOSE TO LOOK OVER& STEP OVER EVERYDAY. THAT JUST DON"T MATTER. I FOR ONE WILL BE THANKFUL FOR THOSE WHOM WILL GIVE OF THEMSELVES SO THAT THOSE WHO SUFFER AND HAVE NO UNDERSTANDING CAN GROW IN KNOWLEDGE.( I AGREE)

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  18. My parents always taught me that "you can disagree without being disagreeable." As a teenager, their clever comment annoyed me, but I see the wisdom in it now. ;) I left a FB support site because of the negativity and drama. It took too much emotionally, and time-wise. It just wasn't worth it. I can't tell you how much I appreciate your blog- thank you for your humor, insight, and willingness to share!

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx