Stranger than you dreamed it...... (part one)

I came across this on Tumblr earlier today. I think I might be able to appreciate what the doctor in question was trying to say with the entire article (which is here) but I feel quite strongly against the way he's gone about some of what he's said.

For now I'm not really in a place to come up with anything constructive, and if I try to write something considered (as I always try to do) I'll only wind up spitting bile.

So, I thought I'd copy in the bit that particularly bothers me and let people have a look, and then later (possibly tomorrow) when I'm possessed of a cooler head I'll come back and say whatever I then feel I have to say.

The gentleman in question is trying to advise chronic disease patients (I think) but in the course of doing so brings up the fact they frighten doctors. I can sort of understand why we might do, but the three paragraphs of problematic metaphors for patients and the (I hope accidental) set up of the doctor experience in comparison to the patient one is extremely non-constructive in itself.

See what you think:

Dear Patients:

You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

We don't play your Headless Game...

Today's post comes from a place of some irritation for me, and it has something of a duality of annoyance about it. Not only does it touch on my world view in terms of societal pressures on weight and health, but this morning it crossed over into the territory of chronic illness and so tripped the rant switch.

I signed myself up to Patient.co.uk some time ago so I could access some more of the resources. I've mentioned elsewhere that I think it's one of the better information hubs on the internet. One of the features is a "My Health" target feature. This was the reason for the email I received from them this morning - I hadn't completed said targets.

What annoyed me? Well, here's the quote:

"We've noticed that you're yet to set your health goals on MyHealth at Patient.co.uk. We'd recommend you set them as soon as you can.

By setting yourself some goals you have far more chance of actually achieving a significant improvement to your health, and you're also able to track where you are in your progress with our progress trackers and action plans."

Still wondering why this irritated? 

I do realise it's a generic email sent to everyone, but it did just make me think about the implications. I can see the use in setting goals during a chronic illness in one sense, but I can also see the potential for it to be damaging and even dangerous. It's very hard to set concrete goals with a condition which can change one day to the next with no seeming rhyme or reason. 

It would require a lot of will power to not end up berating yourself for each missed "target", be it a product of a flare or just a bad day in general. To give an example from my own experience, if I have a full blown IC flare up (thankfully rare) I can't stray very far at all from the bathroom. It would present some difficulties in terms of meeting goals. 

There's a very real danger of getting too caught up in what you feel you "have" to do. With a firm hand realistic small goals could be set and I think this would be most effective on a daily basis. That way it allows you to assess what kind of day your having and tailor any "goals" to suit. 

(That's my excuse and I'm sticking with it!
Courtesy of Awareness Support on Facebook)

I've realised I do this to some extent without thinking in the sense of general housework. I give myself one task a day (for a good day) that I need to do or do part of. It still winds me up somewhat when I can't manage it, even though I know it's beyond my control. I'm getting there slowly, but I still have to sit down and remind myself that it's not something which can be helped. Even knowing what's wrong and having a general feeling of what my body is doing, it's hard not to succumb to "I'm just being a bit lazy" some days and end up expecting too much of myself. That road generally leads to pushing it too far and several days of needing a lot of rest.

Hence my point on the dangers of getting too caught up in targets. 

I think the phrase which particularly bugged was the "actually achieving a significant improvement to your health" - I know it isn't aimed personally, but it's almost like saying you don't try and that you need a rigid set of goals to bind yourself with because without it you will automatically fail.

Taking this away from the specific chronic ill health arena and into a more general sphere, it touches on something I feel quite strongly about. 

Life is not an attainment quiz. It's not a flow chart where you move down a level once you complete a prescribed "goal". There is no way I can imagine it to be healthy to live your life according a prescribed set of expectations which you can tick off. Your path is your own - it shouldn't be compared to anybody else's.

You are not failing your own health if you don't set religious goals. It touches on the "no pain, no gain" mantra, as if health is just one more gym visit away. I must return at this point to the community over at Chronic Illness Cat for a rather dry observation:

( *facepalm* )

Let me try to make this abundantly clear. 

By being a sufferer of chronic ill health you are not "quitting", and you are not failing life's little flowchart. By choosing to conserve your energy where necessary and having the strength and courage to make sometimes difficult decisions based on your overall health needs, quitting is the very last thing you are doing. You're just walking a path which is different from that of a healthy person. Their goals and yours won't necessarily match up or cross over, and that's completely fine.

There is no acceptance and well being to be found in building a cage of expectation and locking yourself within. I personally think it is more likely to be damaging than achieve any good. So open the cage door and take a walk outside. Why not?

"It's a dangerous business Frodo, going our your door. You set off, and if you don't heed your feet, there's no telling where you might be swept off to."

- Bilbo Baggins, The Lord of the Rings by JRR Tolkien

As always, wishing you all many spoons for the week ahead. xx 

And now for something completely different...

I will be making the usual weekly entry to The Retired Bridgeburner later this weekend, but I thought this might be an interesting interlude!

I shall direct you all to my friend Jenny's blog so you can read about what we got up to yesterday raising money for the National Eczema Society, should you wish to.

The £152.72 made from the bake sale goes towards her partner Shane's £6,000 fundraising target for 2013, for which he has pledged to run 1000km - 6 marathons, 26 half marathons and 20 10ks.

You can read about his progress here.

(ALL the cake.)

Eczema as many know is often incredibly visible indeed, but like so many chronic conditions is often woefully misunderstood as little more than a bit of pesky itching. It can be incredibly debilitating, and deserves just as much attention as a condition as any other.

The beautiful irony of the above photo? We sat behind a table full of cake all day, and then went elsewhere to buy cake (and tea, naturally). Delicious, delicious irony!

Who Am I?... 24601

(Yes, I watched my new Les Miserables DVD this week, and there were tears. What of it?)

(I'd say I'm sorry, but I'm not. It made me chuckle too much.)

I’ve been thinking recently about the concept of feeling guilty in response to your being ill, and how to combat it (if you can).

First off I think is to not feel silly or at fault for feeling guilty. I actually think it’s incredibly easy to fall into the guilt “trap” if you will. By not being healthy you are in a position where you have to rely on others to compensate for the limitations in your independence, and inevitably that will sometimes be inconvenient for them. I don’t think you’d be human if some form of guilt or regret didn’t cross your mind in such a scenario.

The problem with this oh so easily succumbed to situation is that it isn't in the slightest bit a healthy one. The only healthy or productive form of guilt is in response to something you've done wrong , and I mean productive only in the sense that it can compel you to make amends. In the sense of falling ill, continuing to be ill and being without a cure, there is no misdemeanor for which to atone. None of us asked to be the way we are – in a lot of cases, medical experts don’t even know why we are the way we are. Call it what you will – a poor toss of the dice of fate, cosmic tasteless humour or any other variation – there is simply no wrong-doing involved.

In short, the feelings of guilt are not productive, helpful or healthy.

When you combine them with the other common feelings provoked by long term ill health; anger and powerlessness being the two that spring most easily to mind, it makes for a very toxic brew indeed.

So what do we do?

A GP I was directed to who had an interest in chronic pain conditions described the road to acceptance as a somewhat truncated version of the grief process. Stage one is disbelief and shock, which I think we have all probably felt at some point although for me I think the blow was cushioned by the diagnosis process taking some two years. It’s hard to be shocked by an answer you’ve been wishing to find for all that time.

The next stage is anger.

I say this to illustrate and reassure others that it’s a completely normal part of the process. It’s entirely unremarkable to flail about and be full of rage at what your body is doing to you, to feel betrayed by the vessel you live within upon finding it to be flawed. I think this is particularly prevalent in a disease which you develop rather than were born with – your body worked fine before, why should it suddenly without rhyme or reason just stop doing so?

For me, the beginning of the end of the anger phase came at the moment I realised my anger wasn't going to make it go away. I think we all know that deep down anyway, but it takes a while for the thought to get a foothold and start to affect the way you view things. Even before I realised just how poisonous extremes of emotion are on Fibromyalgia and Interstitial Cystitis, I’d decided that I could either choose to be miserable and angry to no effect, or I could make the best of things and choose to be happy instead. I’m lucky in this sense that I’ve a pretty upbeat disposition to begin with, which probably helped immeasurably.

The next stage was “grief”. The point where you start to realise the things you have to give up and the irrevocable ways your life has changed. I really challenge the seemingly oft-held view that you should never complain about it. Of course you should complain! It’s a very upsetting and world-tipping-upside-down situation, and as was pointed out to me some time ago; your friends don’t always know they’re needed unless you speak up and tell them. Grief, as with so much else, is somewhat inevitable.

(The 7 stages of grief - courtesy of medstorerx.com)

I think guilt becomes embroiled in both those phases somewhere along the line. 

Guilt that you can’t fulfill everything you did before. 

Guilt that you’re not the same person as you were before. 

Guilt that the changes affect others and not just yourself. 

Guilt because you are what you are now.

I chose to bring this up now because of a situation arising for my partner where I have cause to feel quite guilty. Without going into details, my illness and ability (or comparative lack of) to live on my own without snowballing down into totally bed-ridden again could be very problematic for him. It’s a difficult thing to talk about and we’re committed to doing our best to work around it and find a path that balances on all fronts. This doesn't stop me on low days feeling like the proverbial albatross hung round his neck. This actually led to my first period of sickness absence from my new job as the overall stress brought on a massive flare. One day of flaring and a further day of recovery forced me to get a grip on the feelings of guilt, examine them and start to deal with them anew.

I don’t have all the answers. I wish I did. I can only convey what I find and hope it’s of some use to others as well.

The way to combat this? I've said before that I consider myself immeasurably blessed in the friends and family I have around me, but even so I need to put my foot down on occasion. My Dad has something of a catchphrase - "Everyone thrives on information" - and I feel this is relevant to both the ill person and their carers and supporters. It's in everyone's interests for you to be entirely clear about boundaries of what you can and can't accomplish or attempt, and those also affected need to be made aware of this calmly and politely. I'm told off by my partner many a time for my habit of apologising and explaining if I ask him to do something for me, so it's a habit I'm trying consciously to break.

This is in part wrapped up in being an advocate for your own health. It requires assertiveness on your part in knowing what is sensible and best for you and your overall health. Your health has to come first - before anyone else's convenience and before your own sense of guilt. The simple fact of the matter is it does nobody any good if you overstretch yourself and make yourself worse purely because you didn't have the heart to tell someone it wasn't possible. It's a slow process to learn to be able to ask without guilt, to state your case without embarrassment and to stand your ground without fear. I'm no angel with this - sometimes I manage, sometimes I don't. Consistency only comes with practice though, and I am trying to make an effort.

(More than a little pertinent. Courtesy of bodytypenutrition.co.uk)

This for me is best found in the final stage of that truncated grief process – acceptance. Acceptance that (to quote the brilliant Hank Green) “your new normal” is what it is and that presents certain challenges. You can’t do anything about them – neither can anyone else. You didn’t ask for this and you didn’t ask to cause problems for others. You can only do what you can, and I firmly believe nobody should be put in the position where they place their overall health on the line in response to misplaced guilt.

This is not your fault.

You haven’t done anything wrong.

You didn’t ask for this.

I’m going to close with a favourite quote of mine:

“No one can make you feel inferior without your consent” 

– Eleanor Roosevelt

Do not give yourself permission to make you feel inferior

.

Wishing you all many spoons xx

May 12th - Stand Up And Shout

Sunday May 12th 2013 - International ME, CFS and FM Awareness Day

For our awareness day, I thought I would collate some interesting and sometimes surprising bits and pieces of information. 

• Chronic widespread pain combined with fatigue has been described in literature dating back to the early 19th century. However, it was only in 1990 that the American College of Rheumatology published the first official classification criteria for Fibromyalgia.

• The first time the term "Chronic Fatigue Syndrome" entered medical literature was in 1987.

• An outbreak of a disease closely resembling CFS/ME at the Royal Free Hospital in London in 1955 led to the condition being known as "Royal Free disease" for many years.

• Many researchers think Fibromyalgia and CFS/ME are closely related due to high rates of co-morbidity.

• Both conditions are surprisingly common - Fibromyalgia is estimated to affect 1 in 20 of the world's population, whilst there is an estimate of 250,000 cases of CFS/ME in the UK alone.

• Common co-morbidities for both conditions include: Irritable Bowel Syndrome, Interstitial Cystitis, migraines, depression, anxiety, Restless Leg Syndrome and dysmenhorrea. 

Awareness Ribbons

(Dailystrength.org)

The blue awareness ribbon supports CFS/ME, the purple supports Fibromyalgia. You'll probably be seeing a fair bit of both around today. 

Getting Involved

There are lots of easy ways to get involved in the Awareness Day. Many groups on Facebook including Fibro Colours and the official May 12th page have made posters which can be easily shared, including those aimed at supporters of those who are ill as well as sufferers themselves. 

There's even a Facebook page here aiming to gain 10,000 likes so we can have a Google Doodle to mark next year's awareness day. Give it a click!

More consciously, we ask people to wear purple or blue on May 12th to mark the day. You'll have to take my word for it that I'm wearing purple pants!

The Fibro Colours Facebook page also has awareness bracelets for sale, and you can find plenty of awareness clothing, accessories and more on both Cafepress and Zazzle. More broadly, I recently found Spoons necklaces and earrings on Etsy.

And now for something completely different....

I'm hoping I'm not the only one who has caught wind of this because it's absolutely brilliant, but for those who didn't know Niagara Falls will be lit up in blue for 15 minutes at 21:45 local time for CFS/ME, and then in purple at 22:15 for a further fifteen minutes for Fibromyalgia. Unfortunately this takes place at around 3 in the morning UK time, but it's still a nice thing to know about.

Wishing you all a happy May 12th!

Hanlon's Razor

"Never attribute to malice that which can be adequately explained by incompetence."

I'm sure the list of "things not to say to the chronically ill" will be familiar to many readers as there are more than a few versions around on the internet.

However, whilst they make valid points I do have something of a bone to pick with these lists and the way they are bandied around. They appear to encourage an unfortunate tendency to assume everyone who commits one of these heinous crimes is  right up there with those who talk at the theatre in terms of how quickly they're heading for the Special Hell. 

Whilst the ten things are indeed annoying and it's likely that all my readers have encountered them more than once, I wanted to go through the ten and look at the possibility that not everyone is being horrible. 

(One should never pass up the opportunity for a Firefly reference - Ron Glass as Shepherd Book, image found on Tumblr, source unknown)

10 Things Not To Say To A Chronically Ill Person - Lisa Cophen for Invisible Illness Awareness Week 2007

1. "You can't be in that much pain."  

Well, this one does tend to undo my point a little. I've always thought that chronic pain by it's very nature is a difficult thing to understand unless experienced - how do you explain to another person that you are in some level of pain every moment you are awake? Oh, and in the case of Fibromyalgia it moves, occurs in different places and is generally about as "tricksy precious" as a sensation can come. 

Christine Miserandino's excellent Spoon Theory (included in The Warrens tab) is a fantastic way of explaining fatigue and the drain chronic pain and illness has on the body, but I'm still searching for an effective metaphor for the pain itself. I find myself unable to pick fault with someone finding it difficult to understand: rudeness however shouldn't be encouraged. I personally would never walk up to another person and question something so personal about them, but that's just me. I've found myself very fortunate in having people around me who are incredibly understanding even through my ineffectual flailing for an explanation.

A thought came to me that to combat this sort of thing from friends and family (ie. the people whose opinions matter to you) is to encourage them to read some of the literature you yourself will likely have read about your condition, or point them in the right direction and ask them to read in their own time. My doctor gave me the Patient.co.uk leaflet about Fibromyalgia which I kept to show my parents and partner and I found this to be really helpful. This way the emphasis is not on you yourself to be able to articulate the problem.   

2. "Stop being lazy and get a job."

Who the heck says this kind of thing to someone? I find it hard to imagine this coming from friends and family and so I feel completely entitled to not answer such a presumption. If you'll say this sort of thing, I feel no obligation to waste spoons on fruitless attempts to educate you, and I don't feel anyone else should either. Score one for "Special Hell".

3. "You just want attention."

I've detailed elsewhere in the blog my particularly hurtful run-in with this one so I won't repeat myself. This is something I feel will "always" be an obstacle. Not everyone will attempt to understand or take the time to check their facts before they make their entitled comments and judgments. I can't say it's easy or that I've always been entirely successful, but I strongly feel this sort of thing is best dealt with by rising above it and refusing to allow the speaker your time or thought. Why? Because if people want to believe something they will, and you can do nothing to change it. It's best therefore to try to let it go and concentrate on the opinions of those who do understand and know enough of the situation to not make such idiotic comments. 

Although my case very much disproved the quote at the top of the post, I don't always think people who don't want to learn are being malicious. Some are ignorant (some willfully so) and others don't feel the topic is important enough to warrant the time to learn - is it worth worrying about them if that's the case? Personally I think not.

4. "Your illness is caused by stress."

A common misinterpretation - although not wholly incorrect. In my case with Fibromyalgia stress certainly plays a part in the frequency of flares and also in their duration and severity. On a highly personal note contracting Fibro was what finally led me to curb the more highly-strung and anxious parts of my character and I'm slowly learning to be a little more relaxed overall. Why? Because I have an incredibly good incentive to do so. I don't like my flares at all. Interstitial Cystitis is thought to be an auto-immune disease though, so the cause is most certainly not stress. 

I genuinely think this one is ignorance and not nastiness, and I like to think it's offered by some as an attempt to be helpful (however horrendously misguided). You alone will know at the moment in question whether it's worth trying to explain why exactly that isn't the case. When you pause and think about how common talk of stress and other anxiety disorders has become in recent years and how much emphasis has been placed on the role it has in wider health, it's easy to understand why people may think they're correct in saying this. There's no harm in a bit of education though. 

(Not recommended for Fibromyalgia, migraines or indeed anything else really. 

Courtesy of Part Time Priest)

5. "No pain.... no gain!"

Oh please, this is not a gym session. There is very little "gain" to be had from constant chronic pain. I don't think there is anything which can be said in the face of such rabid idiocy. Score another one for the Special Hell and I'm going to take this opportunity to quote Malazan:

"There is the door, be sure to take all your pompous second-guessing delusions with you." - Shadowthrone

6. "It's all in your head."

Well done for factual correctness, though not in quite the sense you meant! Fibromyalgia is indeed based in the brain and nervous system (or so goes current thinking) so I suppose in a way it is indeed "all in my head". However, that does not in any way give you the right to assume and tell me of your assumption that I'm imagining it all. Again I think this is mostly ignorance but probably of the more willful variety. 

Is it worth an argument? I'm probably going to be leaving myself open to criticism for excessive passivity here, but I just don't think it is. We have limited spoons and must choose their utilisation wisely. For me it's a very conscious health based choice - anger is as toxic as stress and anxiety, and so I choose to concentrate on the opinions of the people who matter to me. Any comments along that line are going to nudge you firmly outside of that group.

7. "If you just got out of the house...."

I would never suggest hearing this isn't irritating, but I really do think it is mostly well meant. However, it doesn't really allow for the fact we want to get outside, we just don't always have the energy. My own attitude is to push as hard as I can (hence a short walk around our lovely local university campus this afternoon just to get out in the sunshine despite being low on spoons) in terms of getting outside, being active and doing as much as I can within sensible limits, but I do appreciate I am allowed some freedom by my middle-of-the-road severity in comparison to those more severely affected. 

However, we all have our own limits and I think it's healthy to push as much as possible from both a physical and psychological point of view. It's hard to feel defeated by your condition if you know you've worked to the limits you have as often as possible.

In the face of this (as I'd guess that it's likely to come from someone closer) I would suggest just explaining (as vaguely or as specifically as you feel comfortable with) why that isn't always possible and then closing the subject. I've become a master at deflection and quiet changes of subject in light of this. Whilst it can be helpful to explain, I don't always want to talk about my health and I'm sure that feeling will be pretty familiar for others too.

8. "You're so lucky you get to stay in bed all day...."

Ignorance is bliss they say. Being able to stay in bed by choice is lovely, regular confinement to bed without choice is not so lovely. I might be passive, but I'm also quite firm in pointing out when a comment is nonsensical. It' can be worth reminding people that this isn't a choice, and those who are ignorant should sometimes be shown politely that this is the case. 

I've come to the somewhat controversial conclusion that I don't owe it to the social whole of a situation to take ignorance such as this lying down - I draw a line between comments like "You just want attention" where the speaker cannot really be converted, and comments like the above which are flippant and said without thought. We've all been guilty of speaking without thinking - but we only learn in the long run if it is pointed out to us.

9. "Just pray harder."

I'm not touching the ins and outs of this one. I'm not religious and I wouldn't like to pass comment on the role of faith in overall physical and psychological well being. If it works for an individual then that is fantastic and you don't fix what isn't broken. 

However, I do have an issue with this comment as it implies the appointment of blame onto the ill person - it basically implies they're ill only because they are doing something wrong. I place this firmly in my category of "lost cause" and for the sake of this post I'll make it a rather appropriate addition to the Special Hell.

10. "But you look so good!"

And lastly we come to the pièce de résitance of my argument against the attitude of assumed malice. This could very well be said in the context of trying to offer some cheer or comfort, not in the sense of the more derogatory and disbelieving "But you don't look sick!" Whilst it's easy to leap to a defensive stance first and ask questions later, I do think it's worth bearing in mind that not everything you don't agree with is spoken as an intended barb. Yes, a lot of chronic conditions are invisible. Some aren't though, and this could well be a bit of a lifter with a bit of careful timing. 

Understandably it might not be what you want to hear. It may save a lot of potentially misplaced ill feeling in the future to just stop and consider both speaker and context, before you respond with this:

Right, that's me done attempting to inject a little peace into an often fractious subject. Positivity won't always apply or be appropriate of course, but it might not be wise to immediately discard it either. 

Wishing you all many spoons for the week ahead!