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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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?
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.
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.
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!
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Congratulations!! A role like that would be my dream!! Keep up the good work and take care of yourself X x
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Thanks Kim! Hope I can do it justice xxx
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I’m sure you will!! Keep us updated with the journey please if you can x x
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I was a nurse before I got sick too, and I agree with everything you said coming from that background gives us an understanding of both sides of chronic illness that most people do not have. Congrats on your post I bet you are helping so many people x
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Congrats on the new position, reading this it sounds like you are the exact right person for the job!
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“But pain is subjective and we cannot compare my pain with your pain.” – I totally agree with this, and not just the pain but how we deal with it, our emotional states, our experience of it all, it so different as unique individuals. Huge congrats with Scope – that’s amazing, and you will be brilliant!! 🙂
Caz x
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Congratulations Claire..you will be brilliant 🙂
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Fantastic news on your role good luck with it! I thin you’re right about man flu btw!!
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Congratulations on your new position with Scope Claire! They’re very fortunate to have you. You’re so right about pain being unique to each of us, and that we can’t compare ours to anyone else’s. Congrats again!
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Congratulations and good look with your new position Claire.
Also thank you for helping my mind up with which of my posts to publish today. Man-flu is a very serious issue which you obviously don’t understand. I shall put my post up shortly, hope you get chance to read of the sheer horror of the condition 😀
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Congratulations on the new position! Sounds like you’re the right person for the job! xx
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Congratulations on your new role! I think you’re right, we are all different, have completely different experiences. I don’t think it’s helpful to focus too much on why or how and just work on what you’re facing right now x
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I am so happy for you that you are able to share your knowledge and support others in a more official capacity! Well done you!
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Congratulations on your new role! You are spot on on your advice about pain. Everyone’s journey with their illness is their own, and everyone’s journey is to be respected.
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You will be a super support. Well done!
I agree about manflu. Where is the immunisation for that one?? 😋
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First, congratulations. That really is super. Second, I can relate to this on so many levels. When I was first diagnosed I wanted to find out any information I could, but since my tumor is rare I had to rely on online groups and it was daunting. It was overwhelming and I had to shut it out. And it’s hard to find that good balance when you write about it too. You want to be honest, but like you said, everyone has their own experience.
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I will also add my congratulations too. Notable recognition for your words and experiences. Well deserved. One bit that stuck out was “pain is what the patient says it is.” I was recently asked how bad the pain was in my thumb on a scale of 1 to 10 (early onset osteoarthritis). I queried the validity of that by saying my 3 could be someone else’s 8. Pain perception is different for everyone so you can’t generalise a scale that is subjective. It is whatever that individual feels it to be. At present mine is not so bad unless it gets whacked or knocked. I also have “high thresholds” which, I am told, is not always good as I should go in way before I do to get help. My GP believes I am so rarely there that when she does see me she knows there’s a problem!
Caring professions need and must tailor to the individual. With debilitating illness, in whatever form, there is often MH issues that follow. Being ignored or patronised will only make the latter worse. When my mother fell to MND, I was appalled by the lack of understanding by her carers. I know things have improved now, but I suspect not every place has the same standards. Support groups are invaluable.
Good post Claire and my apologies for rambling!
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Congratulations on the new role, how fab! And I agree with you about pain – no-one else can truly know how painful something feels to someone, and some withstand pain better than others – but that doesn’t mean we’re weaker or stronger because of it! #TheMMLinky
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Thanks, Kel – and this is exactly what I believe too x
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