Being mindful in the giving of health advice….I have a new role

Last week I took up a volunteering role as a Chronic Pain Advisor for the online community of a UK disability charity (Scope).  I was approached through this blog to take part and those of you who have been with me for a while will know that this is right up my street.  To say that I am deeply honoured to have been asked is an understatement.

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a new role

I have started to make some comments on the site, and it suddenly felt very real when an official title popped up after my name.  It has also made me consider the importance of just how we relate to each other and the advice that we give – as a health care professional, a volunteer advisor or indeed a loved one.  For each and every person is an individual and will come with very different needs – how often is this truly recognised by our health care professionals when seeing people with chronic conditions?

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At a recent support group meeting the importance for sensitive communication skills became very apparent.  Everyone in the group either had the condition or had a relative/loved one with, in this case, Ehlers Danlos Syndrome and had gathered to hear a medical professional, deemed an expert in his field, speak.  Spoonies, don’t shout me down, but I do worry sometimes that when a group gathers there can be a danger of frightening new members with horrific tales of hospitals and procedures, but also a competitive element toward who has which symptoms – I have written about this before.

It became increasingly obvious as this particular meeting went on, that a couple of comments made by the presenter were very upsetting to some group members.  I am certain that there was no ill will meant, but a point was made that this illness is not progressive, and the insinuation was that any progression in symptoms was down to the individual not exercising sufficiently.  Now there may be an element of truth in this – the need to keep moving in order to prevent deconditioning – but the way in which it was said made many in the room feel like they were not trying hard enough.  Picture yours truly sat in the front row in my wheelchair, and the message that I could have taken was that if I had done my exercises properly I could have restored my mobility and eliminated my pain.

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My shoulder – dislocated

 

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My neck – vertebra popped out of alignment

Of course, I know that this is not the case for me and I also know that I do work at keeping as physically fit as I can and have always done my EDS exercises.  Years of yoga kept me nursing for nearly 20 years beyond my initial back surgery!  I also know that I can be bloody minded in my determination to do something…..but on days when fatigue hits, or pain flares, or the POTS leaves me reeling with dizziness and unable to sit upright, I assure you I will not respond well to being made to feel I am not trying! (Family..hold your tongues now and forget the other meaning of the word).

So this takes me back to my original point – we are all individuals and whilst we might share a diagnosis and certain symptoms, our actual experiences will all be different.  Only this morning someone said to me that they appreciated that their own pain was nowhere near as bad as mine, but they would like some advice….But pain is subjective and we cannot compare my pain with your pain.  I replied that one of the first things I learnt as a student nurse nearly 30 years ago was “pain is what the patient says it is” and I still believe this.  Sadly a lack of time at appointments, a lack of communication skills to unpick a patient’s symptoms, and a lack of continuity to develop a trusting relationship between patient and medic, all fail to allow for true individual care of the person.  This can be made even harder to swallow when a sweeping comment is made about symptoms by someone who has never actually experienced them.

Envy

 

It is so important for us spoonies to feel that we are listened to and being treated seriously – actually I think this is important for everyone, particularly where health is concerned and I hope to be able to justify the faith shown in me by the charity.  The exception to this though is the couple of cases of man flu in our house at the moment, and their belief that their pain is worse than anything else!!!  This is where my patience wears thin!

A Chronic Comparison?

I’ve had this post roaming around my mind for a couple of weeks now, and finally put pen to paper…or rather put the finger splints on and attacked the keyboard.

Last week I took part in an on line research forum into chronic lower back pain.  Due to confidentiality clauses I can’t tell you any details, but a group of us were required to spend at least an hour each day answering a series of questions, or giving our thoughts and feelings about our conditions.  We were also encouraged to comment on each other’s posts and interact as on any forum.  The week before Duncan and I went to an EDS support group, where we were joined by about 20 others and asked to think about our coping strategies for different aspects of the illness.  The final trigger was a tv programme featuring my chronic condition, Ehlers Danlos Syndrome.ch7jwb_weaaooad

So I feel that I’ve spent a lot of time recently reflecting on my various conditions and revisiting my “journey” – don’t you just hate that expression, very X Factor or Strictly Come Dancing!  It was suggested for the forum that we plot a picture of our individual pain journeys, and I was surprised at just how long it took me to do this and how much was on it.  Of course, I needed to go back to childhood as when I looked back I cannot remember a time of being without pain, but as a child and teen I assumed that everyone else felt the same way.  file_000-9

I know that it isn’t particularly clear but this is my “map” detailing the EDS and the original back injury and subsequent chronic back pain.  Those of us drawing these maps all had very different backgrounds & experiences, and I was really inspired and moved by some of the other stories. I started to become aware that some people were being put off the idea of certain treatments (eg surgery) because of the negative experience of others.

The support group was a night out for us the previous week, and we even managed a meal before.  It is good meeting with others in similar positions and it is always great to welcome new people who attend, particularly as we are a very new group. We were able to come away with some advice for dealing with extremely anxious teens – there is a lot of literature out there now that recognises a direct link between anxiety  and EDS.  I must admit though, that I do feel a little conflicted sometimes in these group situations – the support on offer can be fantastic, but it can also be tricky taking on board a line of treatment/therapy that someone else swears by that either hasn’t or may not work for you.  When another person has gone on, for instance, a special diet and all their symptoms have gone into remission giving them a new lease of life…..I used to see this when I was working in palliative care and patients would wonder if  they hadn’t tried hard enough with a particular diet or vitamin regime, that it was their own fault that they hadn’t halted their illness when this had cured Mr X.

I wonder if it is just human nature to compare ourselves to others, in sickness and in health as the saying goes. But just how infuriating is it when some well meaning person tells you about the wonderful remedy that Auntie Ethel has just used with great success for her back pain/migraines/or even a serious illness cure?  Do you not want to scream out “Do you really think that I haven’t tried?” because I know that I do!  But of course I don’t…..

When these comparisons happen, be it ourselves or others making them,  I wonder if there can be a thin line between support and competition.  I do realise that this probably sounds awful as no one who is chronically ill wants to compete with anyone else over symptoms.  But with some of the multi system syndromes that we spoonies have, no two people will ever present in the same way and the list of ailments we have can be endless.  I have been reading facebook posts only this evening from frustrated people who find that their own families don’t believe their diagnosis because “cousin Freddy has that and he is much worse”.  I think that we all know that there are still medics out there who call into question the legitimacy of some syndromes and the severity of patient symptoms.

Just because a certain operation helped me doesn’t mean that it will help you;  just because you have found a particular drug fantastic doesn’t mean it will help me; just because my health regime allows me to walk for miles every day doesn’t mean that it will get you out of your wheelchair (it doesn’t BTW – I use my chair more and more!).  My back & leg pain and the treatment that I have had to undergo to find any relief is very different to the chronic EDS pain that I also suffer.  The only people who have really understood the former have been my group on the scs pain programme and those in neuromodualtion groups.  Yet whilst some people who have fantastic success with the stimulators have had a new lease of life,  I have actually deteriorated physically despite the stimulator being a success.

My deterioration is down to my EDS, escalation of POTS and an increase in my EDS pain.  Ironically the requirement to wean myself off the opiates in order to have the stimulator to reduce one type of pain, resulted in an increase in the other!  Many people who have had back problems would be amazed that even with the metal screws fusing my spine and the electrodes to control the pain, I can still hold a pretty good downwards facing dog yoga pose.  But of course my zebra friends know that this is actually down to being bendy and that sometimes being able to get into those strange positions is, for us, more dangerous than beneficial.

I am probably my own worst enemy when it comes to making comparisons and always feeling that I have little to complain about.  This happened when I watched the BBC DIY SOS which featured 18 year old Antonia who has Ehlers Danlos Syndrome and had been hospitalised for 3 years. 15831613-large The programme was great for highlighting EDS and this amazing young lady – I watched it twice and cried each time.  Of course I turned to my lovely teen girl and said “I feel guilty for making a fuss!” and whilst her brothers would probably have agreed with me, my lovely girl (now suffering her own dislocations, hand pain, anxiety, etc) told me off for thinking that way telling me “It is all relative”.  Out of the mouths of babes….

So what am I trying to say?  We are all individuals.  We will all experience a common cold differently (think man flu!!).  So for the many debilitating chronic syndromes out there, no two sufferers will experience the same symptoms, the same reactions to therapies or the same psychological impact as another.  I must allow myself to live with my condition in the best way that I can and for you to do the same – and somewhere along the way we can support each other and hope that the healthy world will do the same without expectation or judgement.

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The Individualism of Major Tom

This morning we awoke to the news that David Bowie had died.  The world is in shock because this “star” had kept his illness private – completely understandable, but in an age of celebrities who live every second of their lives in the full glare of the world’s gaze, do we feel aggrieved when a megastar chooses not to share everything?  How must it feel when the world thinks that they know you, even that they own you?

The vicar who gave the “Pause for Thought” on Radio 2 this morning spoke of his need as a teenager to conform, to be one of the crowd and that David Bowie was a bit too “different” for his insecure 15 year old self to follow.  All day Bowie has been described as an “individual”, so much so that far from wishing to be one of the crowd, one of a particular music genre, he actually went out of his way to be completely individual.  A chameleon one presenter said; constantly throwing off his identity as he became tired of one persona only to slip into another.  How many have the confidence to invent themselves as a space alien named Ziggy Stardust and actually possess eyes of different colours to set off the transformation.  But rather than a new identity, I wonder if each new persona was a disguise?  A need to hide behind different sets of makeup & hair colour in order to protect a core individuality, rather than to reveal himself to the world?

But sometimes those traits of individuality that mother nature has endowed can feel like a curse.  Not everyone wants to stand out from the crowd and if it is a disability that marks out an individual, it can be most unwelcome.  A birth mark, a stammer, a hearing defect, a chronic illness, a fatal illness.  We do all cope with whatever is sent to try us in our own individual ways – and if this is the rock star bowing out with grace and a final hurrah album, then he truly deserves his final applause.