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Grappling with the ‘Shame’ of Having a Rare Invisible illness

“Shame is a soul eating emotion.” – C.G Jung

In 2016, over a period of a few months, I came to realise how much shame I was carrying because I was still unwell, over 20 months, after a ladder fall left me with a debilitating spinal fluid (CSF) leak, somewhere in my spine. I write more about that journey of learning about shame and the devastation it can bring in this post ‘The Shame of Chronic Illness and Pain.

It was a journey of realisation and revelation following researching and contemplating what SHAME actually is and how damaging it can be in our lives. I was inspired to think about shame following reading Brene Brown’s book ”Daring Greatly: How the courage to be vulnerable transforms the way we live, love, parent and lead.’ The book encourages us to find the courage to be honest and vulnerable about who we REALLY are. It also talks a lot about shame and how destructive it can be in our lives and relationships.

“Shame derives its power from being unspeakable…. If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to whither.” – Brene Brown

Reading the above words inspired me to write publicly about my realisation that I was carrying a lot of shame about the fact I was STILL very unwell. This had been made so much worse by the many battles to get properly diagnosed and then treated. Which many who have rare illnesses/ diseases can face. That includes many of us suffering from CSF leaks whether caused by an accident, purely spontaneous, from a labour epidural, C-Section spinal, a lumbar puncture or other medical procedures such as spinal surgery.

Many of us have faced doctors who have disbelieved us, or at least, disbelieved how bad our symptoms and pain are. We have been on a journey of misdiagnosis and seeing various different medical professionals, until finally finding doctors who understand and can help us. (When you do finally find those doctors they are valued, appreciated and loved more than they will ever know.)

And it’s simply because many doctors do not know much about CSF leaks. In the end, when we do get diagnosed, we are often told how ‘RARE’ we are. Although recently, it is becoming clearer that we are not actually as rare as people once thought – just commonly misdiagnosed, or even ignored, in the past.

Fighting to be heard when you are so very unwell is utterly exhausting and often completely overwhelming. Fighting your case when you are healthy is hard enough. But fighting when you are sick can be an utterly demoralising, shame filled, journey that can leave you with a potentially deeply dark despair. Especially when you are no longer confident that ANY Doctor will really listen and learn, what they need to, to help you.

Shame is that feeling of ‘I am not enough’ or ‘I am not good enough’. You can feel like a failure – not necessarily because of something you have done wrong, but because of who you are, or because of the circumstances you find yourself in, often due to no fault of your own. Sometimes simply because you have a medical condition, or something in your life, that most people just do not, or even refuse, to understand. You feel embarrassed, ashamed and humiliated and can then wonder if there is something really wrong with you as a WHOLE person. You think ‘perhaps I am just not ‘good enough’ or ‘strong enough‘ to do this, why can’t I ‘be and do better’ than I am doing… why do they not understand and listen?’

…. and SHAME begins to relentlessly and often unknowingly eat away at you!

Shame really messes with your mind and emotions and brings a whole spectrum of reactions from – hiding away from other people and getting lost in your own failures and problems – at one end – to getting angry, blaming others and lashing out, for the feelings you have – at the other. And often then trying to cover up your shame by pretending and putting up a front – in between it all. Sometimes we deflect the shame by blaming someone else. But often the fact is, whether or not someone else has directly or indirectly added to or even caused your shame, the soul destroying emotion of shame is still owned by us and we are the ONLY ones who can truly face it and deal with it.

Whilst we simply blame others for it, we won’t be able to get free.

Shame quote 2

I really do believe many chronically ill people, particularly those with a rare condition or invisible illness, can carry a lot of SHAME from their difficult journey to be heard, supported and helped.

Shame…… that we are ill in the first place and can’t ‘overcome it’. Like other people can with ‘normal’ or less severe illness, and sometimes even more severe cases that can be more easily fixed or treated.

Shame…… when you know the doctors AND even sometimes members of your own family and friends are wondering if it’s ALL or at least PARTIALLY ‘in your head’. When the reality is your body is not actually functioning anything like how it should.

Shame….. that however much you try to engage with life, and ‘push through the pain’, you are still so exhausted by it. It daily feels like you are running a marathon after being whacked round the back of your head with a baseball bat. But you are also very conscious that you do not want to keep sounding like you are complaining and being negative. So you try to smile and chat ….so in reality many people often do not know or really understand how unwell you actually are. Until you have to leave and retreat due to the immense pain and inability to cope with the trauma in your head and body, so as to HAVE to get back to relief of lying flat again.

Shame…. that even when you ‘look well’ in reality nothing has really changed since last month when you ‘looked well’ for those couple of hours, or so, you managed to be ‘upright’ and out, or with others at home (even though in reality most of that time your body was actually screaming at you to get flat again so your brain could get back into its right position in your skull).

Shame….. when tests and scans come back negative and do not correspond with how severe your symptoms are. So you lack the clear, non subjective, medical evidence you need to ‘PROVE’ to others how unwell you are. (Although even having evidence does not necessarily always help and does not always correspond with how bad your symptoms are anyway).

Shame.… when someone asks you how the ‘headache’ is and you really want to scream at them “it’s not just a headache!!! Please stop just calling it ‘a headache’!! It’s a complex and debilitating set of neurological symptoms, pain and a feeling of trauma throughout your whole body which gets increasingly worse when I am upright until I cannot cope anymore.”…. But you instead calmly reply ‘yes, it’s still there!!’ (And has been for over two years …. every day…. most of the day…..when I am actually able to be upright).

Shame.… for the daily feeling that your life is currently so ‘small and insignificant’ because you can’t DO very much anymore. So you no longer feel like a fully functioning member of society. And can’t even fathom what a day with no pain and symptoms feels like any more.

Shame…. that you have to spend so much time in bed, because with spinal CSF leaks the only time you feel fully well is lying FLAT IN BED. (But it’s out of necessity – NOT a relaxing lie in… at times my bed can feel more like a prison than a retreat).

And the shame can pile up….

….shame….
upon shame.….
upon shame …… upon shame!!!

After every new appointment, after seeing ANOTHER doctor who doesn’t understand, after every test that comes back clear, after every social event you have to miss, after every month you can no longer work.

…and after…

Every person you have to tell every day, every week, every month, every year that you are STILL not well and there is still no clear end in sight!

Shame quote copy

I found so much freedom from that shame over the last year. But sometimes something new brings it back to the surface. It creeps back up on me again and attempts to sink it’s toxic claws into my thinking and emotions. I then realise I still have some underlying shame there …. or at least it’s destructive sticky residue is lingering and refusing to leave.

So as Brene Brown advises, I am again choosing to speak it out in this new post. And to say to others – “I feel your shame too, I feel the exhaustion of the fight, I feel the anguish that the nightmare seems to never end and the chaos it’s brought in your family and relationships.”

Every time I read about another suffering soul facing ANOTHER exhausting battle to be heard – I feel that despair with you!! I have been there, I have walked, and still walk, that never ending road of endurance. An endurance you are not always sure you will still have the strength for tomorrow.

A road I did not choose myself, but wake up to every morning – with no other option than to get up and face another unbelievably exhausting day of trying to LIVE LIFE with relentless debilitating  neurological pain and stiffness (head and spine), brain fog, mental and cognitive fatigue and impairment, body and limb weakness, vision issues, tremor, shaking and much much more. And have to dig deep daily to CHOOSE calmness, kindness, thankfulness, love and hope DESPITE it all!

Which is not easy!! 

I have also known the darkest of nights when you convince yourself that escaping life itself must be better than living it like this…. and then ALSO then felt the shame of being the one who ‘couldn’t cope anymore’ and was now mentally unwell too. The one who couldn’t endure how she hoped she might. The one who fell apart when she reached the end of herself after a year of health battles and disappointments.

And that is why I know, although I am only one voice, I am one voice speaking for many!! Speaking up is ONE of the things I can still do. So I hope as I say it this way – we can also become many voices united as one.

To remind people (especially doubting medical professionals and doubting family and friends) that until you have walked our path and we have walked yours – we have no REAL idea how hard the other person’s journey has really been and is.

So please don’t assume you know! And we will try our best to do the same for you!

Just because my case is ‘unusual’ and you don’t understand it. Just because my physical condition pushed me over the edge mentally. It doesn’t mean that it is mainly psychological and that I do not have a complex medical condition that leaves my body utterly debilitated. If you lived in MY body for a day – you would soon find that I do not have a simple ‘headache’ like the headaches you have probably known that go away with a couple of pills or a good nights sleep!! 

We just ask that you PLEASE listen and allow your mind to be opened, rather than try and force us into the boxes of your limited understanding and experience. I do not expect you to know what you don’t know. But I would appreciate it, if you could just listen and try to understand, and humbly realise that you perhaps do not know as much as you think you do about what is wrong with MY body.

Because….

Until you have watched your health being ruthlessly stolen from you overnight – with no clear assurance of getting it back any time soon. Until you have known the agony of mis-diagnosis and constant questioning from medical professionals unsure of what to do with you, in part, due to a lack of knowledge about your ‘rare’ invisible condition and subjective pain scales. Or worse – until you yourself have faced being ‘interrogated’ by disbelieving, and defensive, medical professionals who think they know – what in reality they obviously don’t. (We are so very very grateful to those who acknowledge what they don’t know and do choose to listen and learn with true humility regardless.)

You do not really know what it is like!

But when you do ‘get it’ or at least try to, then you are welcomed into a new family of others who do KNOW! Who have lived through the devastation of a rare debilitating invisible illness and walked a similar path either personally or alongside their loved ones, close friends or with many of their patients.

When your eyes, ears and hearts are opened and you meet others who have faced a similar pain and carried a similar shame – you know you are not alone! It gives you more fuel for the fight because the battle is no longer JUST YOURS. You are ALSO fighting on behalf of the MANY. Those walking with you AND those coming behind you.

So today I again choose to throw off my shame by SPEAKING IT OUT – so that I can take another’s hand. And say…. “yes this journey is so very tough…. yes the battle often seems relentless….yes we can’t be sure what the future will bring… and yes you will often wonder how you will ever endure the never ending storm.”

But we can fight TOGETHER!!

Some days I struggle to find the strength to fight for just ‘me’! But it’s then I must remember – it’s not just me I fight for!! I fight for you, your family member or loved one. I fight for the person, family member and loved one who will come behind me.

I fight with, and for, all those who know the relentless exhaustion of battling a rare or chronic invisible illness and pain.

WE also fight with, and for those of you, facing any challenge in life that feels beyond you at the moment. Because WE know what it is to have to choose to keep on going, and keep on living, when some days WE just really want to give up and escape it all.

So will you join our fight of many TOGETHER?

Because it’s then… That I find I can dig EVEN deeper. Deeper than I have ever gone before. To find the strength to endure OUR storm TOGETHER!

Because this life shouldn’t just be ALL about ME and MY struggles and pain. It’s about US finding a way to navigate through and endure the ups and downs of life together – as equal broken specimens of humanity. So that on the days I feel like I am falling back into a pit of despair, when EVERY part of my debilitated body screams at me to give up the fight. I know there is someone else who can reach down and grab my hand as I start to fall – offering empathy, love, compassion and strength – whilst also helping to pull me back up to face another day. Then tomorrow it might be my day to reach down to you, as you fall, and help pull you back up to face another day too.

And that way we will break away from the shame that tries to chain us up! AND dig deep to ENDURE the tough times TOGETHER!

Life is ALWAYS better when we face it TOGETHER!

“Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble. ….. A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken.” – The Bible (Ecclesiastes 4:9-10,12)


Do you feel that shame? We all carry shame in some form. Please do comment below – if we can speak it out then perhaps TOGETHER we can beat it!

For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

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Living With a Spinal CSF Leak.

“There is no greater agony than bearing an untold story inside of you.” – Maya Angelou

I started this blog at the start of January 2015. For a while I had wanted to write. But in all honesty I was scared.

“What if I write and nobody wants to read it?”

I soon learnt that writing isn’t just dependent on others reading it. It’s a great form of self expression in its own right. It’s the attempt the find the right words to tell our own stories about our lives.

One of the first momentous, yet deeply personal stories that I shared was the first anniversary of my Mums death in a post called ‘A Journey Through Grief and What I Have Learnt.’ I had felt that in telling my own unique story, people might just connect and maybe they could relate as they struggled through their own story of grief.

Little did I know that the same week I started this blog and wrote the above piece, would be another life altering week for me.

That was the week that I sustained a brain/ spinal injury I am still battling now –

21 months later.

That day I was painting and needed to reach high up near the ceiling. So I used a relatively small step ladder to stand on, but it was resting in a place that wasn’t completely stable. I had already used it that way for hours and felt confident it was ‘stable enough.’

But my confidence was misplaced.

I took a seemingly small risk, the type that we all take everyday. But on this particular day my risk taking didn’t pay off. It was that day I had an accident. It was that moment where it felt like so much went wrong.

I have been living with the consequences of that decision ever since.

In one horrible moment the whole ladder had toppled over and took my feet from under me with it. I fell onto my back and hit the back of my head….

But,
It’s OK!
I am fine!
A bit dazed!
A bit bruised!
No real damage done!

Or so I thought!!

So I finished that painting. Exhausted & aching all over, but obviously to be expected after painting all day and having a few bruises from the fall. But within 48 hours it became obvious,

I WAS DEFINITELY NOT OK!!!

Two days later I was diagnosed with a concussion.

“You should be better by next week.” they told me.  But I wasn’t….It got WORSE!!
So we went down to A&E.

“I am sorry Mrs Hill you have Post Concussion Syndrome. You are looking at about an 8 week recovery time.” they said.

No surely, not me.
Give it four weeks.
It can’t be that bad.
That is such a long time!!! (I confidently, yet naively thought!)
I’m sure I can bounce back like any other time I have been ill for a few days.

Eight weeks later of being pretty much bed bound, in a dark and quiet room, and things still getting worse.

We head down to A&E for the third time since my fall.

I was finally admitted that time because I was so unwell, in severe pain and vomiting after being given morphine which didn’t touch the pain, only made me feel even more ill. I was finally seen by a Neurologist the next day and she moved me to their ward to look for evidence to support their initial diagnosis of low pressure headaches caused by a spinal CSF leak.

I am not going to list all my symptoms because I have done that all before. But what I will say here is that I am so very, very grateful to a handful of people who in the midst of their own pain and struggles decided to help others like me.

I have to tell you about the wonderful team at www.csfleak.info who helped me to understand more about my injury and helped me to realise that the fact I ONLY ever felt remotely well LYING FLAT IN BED for those two months, was not due to post-concussion syndrome after all,

It was probably due to a  SPINAL CSF (Cerebrospinal Fluid) LEAK!

This meant that somehow the accident had caused a small tear in the membrane in the centre of my spine (the dura) that holds in your spinal fluid. This means that my spinal fluid leaks out and is absorbed my body.

So when I am upright sitting or standing, due to gravity, my brain drops in my skull, because it lacks enough fluid to hold it in place.

Twenty One months after my fall.

I am still not better!

I have had some ups and downs along the way. Bad months in 2015 of being almost fully bed-bound. And other months after epidural blood patches (I have had 3) of being mostly upright.

But since that fall I have never had one single day of being…

Fully
Symptom
Free.

Such is the journey to full healing with this unusual and often under-diagnosed condition. Many people do get diagnosed, receive treatment, get well quickly, and never look back.

But many others face constant battles, discouragements, set backs and difficulties throughout their journey of being diagnosed and treated. Often a lack of knowledge by the medical profession makes getting fully better hard for many.

stone wallRecently, I have become so acutely aware how little many doctors, and the general public, know about spinal CSF leaks. I have heard so many stories of people struggling to get a diagnosis and, even when they do, facing many barriers to treatment.

There are many hospitals that really don’t know what to do with ‘these rare patients’ and this often makes delays in treatment an unfortunate reality for many.

I am so grateful for an amazingly supportive and well informed group of CSF leak sufferers who form an online community through the ingenious invention of Facebook groups. Many of us cannot imagine how we would have faced this journey without one another and I honestly think that some people in those UK and US based groups would not be alive today without that wonderful resource. Despair and suicidal thoughts are very prevalent within this group of patients.

Having someone tell you “I get it” whilst you both spend yet another day staring at the ceiling, flat in bed, can mean everything to someone really struggling. Even when that other person is half way across the country or even the world.

We face the daily struggles together!

It can be a lonely and difficult road battling a chronic illness. That road sometimes feels impossible when you slowly begin to realise how little knowledge a lot of doctors have about your condition.

I recently watched a very moving video, that is on the wonderful US spinal CSF leaks charity website. www.spinalcsfleak.org/resources/patient-stories/ About a lady who got a spinal fluid leak from a very badly placed epidural for the birth of her second child. She got two dural tears from the needle which caused spinal fluid to leak from her spine.

It took her 2 1/2 years to recover (she had a new born and 4 year old at that time) and she had to have 11 epidural blood patches (where they inject your own blood into the epidural space in your spine) and two surgeries to get better.

But what struck me the most was that even though everyone knew the area of her spine the leak would have been in (which is half the battle with traumatic (or spontaneous) leaks like mine) time and time again doctors refused to listen and often implied that there is no way she could be leaking CSF, and perhaps it was instead, ‘all in her head’ or something she would ‘just have to live with’.

I cried so much watching it because myself and many other leakers have faced similar battles to hers.

I find it heart breaking when people are suffering and needing help and support. And yet due to a lack of knowledge and understanding by the medical profession AND the general public, people are often told things like;

‘We have got nothing left to offer you,’
‘Try your best to get on with your life’
‘Perhaps you should try and get out more.’

Which is just a slap in the face when you are literally stuck lying flat in bed!

And yet, it doesn’t need to be that way!

There has been so much research done about spinal CSF leaks already. There IS knowledge out there. There are specialists who are leading the way, publishing medical papers and providing hope that many people CAN fully recover and perhaps don’t have to just learn to live with it after all.

Peoples minds need to be opened.

Medical professionals need to know that there is more information out there than they might realise. That there are a whole range of diverse symptoms. That people can still be leaking and debilitated, yet still function (well sort of) upright most of day. That there are many different kinds of treatments available and things that can be done to help.

  • Recently I have been thinking; how I can spread awareness?
  • How can I do my bit to help make the way clearer for those patients coming after me?
  • What skills can I offer the cause that might make a difference for both me and others?

One thing I have chosen to do is write. I can use my words to draw attention to this condition. I can tell my story in the hope it eventually reaches the people who need to hear it.

“Well, everybody’s got a story to tell and everybody’s got a wound to be healed.” Plumb

So today that’s what I want to do. I want to welcome you in to my world. I want to share with you a snap shot of what it is like living with a chronic CSF leak. So that you might have some more understanding yourself.

These days I am so very thankful that I get more hours upright than I used to. It really does make it that much easier to deal with. It helps me to feel more a part of the world around me and connect better with my kids. But it is still very very hard and debilitating to live like this.

stone wallHere is a typical start to my day….

I got up about 7:30am this morning. Lying in bed in the mornings I can actually feel pretty normal. But that feeling never lasts for long!

I get up, shower, get dressed and have breakfast, including a cup of tea and 2 pro plus caffeine tablets (because I can’t stand coffee!!)  – which can help to give me a bit more up time (although I often find it can be an artificial type boost feeling). During this time I already feel the neck stiffness and occipital (bottom back of the head) pain beginning to build up, but it’s manageable and relatively mild.

I drive part way and then walk my youngest to school. Chat to the other parents/ carers, go back to the car. Then this morning I decided I would pop to the shops.

My head is getting worse bit by bit, the pressure is building, the pain in my neck/ occipital region is increasing and my head is beginning to feel more full and a little cloudy.

I go into the supermarket – only to get a few things so it’s not too heavy. I don’t use trolleys, I don’t use a basket. I don’t take a handbag – only my purse – so that I can get as many things as possible and carry them without making my symptoms much worse.

So depending on what I have that might be 4-8 lightish items that I can hold in my hands/ arms without dropping them. If I do drop one of them (like the other day), I have to leave it or ask a shop keeper to pick it up for me. (Because bending down might make my leak, and will certainly make my symptoms, worse. At home I use a grabbing stick like the one below).

FullSizeRender

The nausea is setting in.

I pay for them on the self service check-out which is at an awkward angle so you have to bend a little to put them on the counter once scanned.

This increases my symptoms.

I bag them up and pay and by this point – just carrying the weight of those few things is making the nausea worse, so I start gagging in the lift to the car park, feeling like I want to vomit (although I don’t think I am ever fully sick).

Thankfully there is no one else in the lift with me!

I drive the short distance home – put the things away. Talk to my husband while he’s making a cup of tea (he is working from home today). During our conversation my head and neck is getting worse (I feel like someone has whacked me round the back of my head with a baseball bat!!) and I start gagging again uncontrollably – but thankfully I don’t actually vomit.

So my husband says, “you’d better go and lie down.”

I walk up the stairs and can feel my legs beginning to get very weak, I have to think about the steps I am taking, willing my legs to keep moving. The cloud in my head thickens. That feeling of not being able to cope with the intensity in my head floods over me! 

It’s 9:30am – I have been up two hours and can no longer function upright!!

I am now lying down flat in bed – feeling a lot better and writing this. I will stay here for probably an hour or two before getting up again to do some more jobs at home for maybe half an hour to an hour before the same thing happens and I have to lie down flat again.

That’s how it goes throughout the day every day although later on in the day the up times are often less and the down times can get longer.

If you saw me at the school at 8:30am, even though I had symptoms, you would think I looked fine, chatting to people (which is great because some days I don’t get to see many people).

So this is me on a good day – last year during my worst times the above would all happen with my symptoms within about 10mins of being upright.

I couldn’t even have a shower.

I would have a shallow bath once a week which I would have to lie completely flat in. As soon as I got out I would have lie on the bed with a towel round me, with my wet hair on a towel. It would take at least 1/2 hour to 1 hour before I might manage to be upright enough to put some clothes on and dry my hair a bit with the hairdryer. Or often my husband would help try and dry it whilst I lay flat.

When I was in hospital, a year ago, waiting and battling for more treatment (a second epidural blood patch) – I was in a bad way. I would spend all day lying in a head tilted down bed to alleviate symptoms and keep my brain in the place it should be. I could only manage about 5-10 mins upright at a time which makes things very hard.

We were facing lots of barriers and delays at that time (which I write about here), because the anaesthetists didn’t want to blood patch me a second time (after 5 much better months following the first) they instead wanted me to try an occipital nerve block done by the pain management team. (I did have the nerve block, it didn’t work at all, but it did leave my head, neck and hair covered in the sterile cleaning stuff.) Following that it took me two whole days to find the strength to get my husband to take me into the shower in the hospital bathroom so that he could help me wash all the chemicals from my hair and neck and help me get changed. He then dried it with a hair dryer whilst I lay flat again. (That would pretty much do me in for the whole day!!)

It’s an utterly debilitating condition. It’s not good for anyone’s physical and mental health to have to lie flat in bed all day. And yet some people are left that way, long term, because doctors don’t know what to do with them. They don’t understand how to treat them.

They do not seem to realise how impossible it is to live like that!

People are just not aware that many spinal CSF leak patients end up feeling suicidal (as I did at Christmas and write about here) because of the physical and psychological toll of the condition. Which is often exacerbated by the battles to find doctors who understand the condition, show compassion and actually do their best to help you.

There can still be an ‘old school’ mentality at large in the medical profession, even following correct diagnosis, of trying one epidural blood patch (and sometimes not even one) but if it fails to fully get you well, then they recommend that they should just try to help you manage the pain.

‘Manage the pain?’

I don’t have a sore leg, or a mild headache that goes away with some pills or a even a worse headache and stiff neck that is solved through a nerve block.

My brain drops in my skull when I am upright, wreaking all sorts of havoc in my head and body until I literally can’t physically or mentally cope. You can’t just ‘manage’ that kind of pain. And actually I wouldn’t always describe it as ‘pain’ it doesn’t do it justice. It is an intensity that can actually only be described as a sensation that is ‘beyond pain.’

(And just to add here that no painkiller I have had (Including IV morphine) has ever touched it)!

IT’S REAL!
IT’S HORRIBLE!
IT’S DEBILITATING!
BUT – IT IS TREATABLE!

Things ARE changing, patients are speaking out and coming together as a force to challenge conventional thinking about CSF leaks. And thankfully, little by little there are more wonderful doctors who are meeting enough well informed leak patients to see how great their suffering is and are slowly beginning to offer them new opportunities for diagnosis and treatment.

When someone with a leak meets a doctor who understands, or at least tries to understand, it’s truly a beautiful thing. It honestly means so very much to us.

Those doctors will never be forgotten.

We don’t expect miracle workers. We know we may not be easily fixable. But to meet someone with a willingness to try, an ear to listen, a humility to learn and a compassionate heart can make all the difference to someone on such a difficult road.

stone wall

In February this year (2016) a video was posted on You Tube that is doing so much to help change people’s minds and hearts about spinal CSF leaks. In the video Professor Ian Carroll from Stanford University Hospital in the U.S. gives a passionate lecture in which he is trying to enlist the help of doctors and medical professionals to help find and treat those suffering from spinal CSF leaks.

Through this video Dr Carroll has become our spokesperson, bravely, boldly & passionately challenging conventional thinking in the medical profession at large. And joining others in the quest to change current practice and stop people suffering unnecessarily from a mainly treatable condition.

I know for me, and many other longer term suffers, Dr Carroll’s video on YouTube is a breath of fresh air that reminds us that we are not going completely mad. So many patients have taken great hope through the impact it, and other recent information, is slowly having on awareness, diagnosis & treatment of spinal CSF leaks.

I am so very grateful for this wonderful resource from a doctor who is wanting to reach both doctors AND patients. I have gratefully been able to share this resource with some of the many doctors who have cared for me over the last 21 months. Some who have gone to great lengths to understand the condition more and do their best to support and treat me.

It is always a special moment when you meet a doctor who does watch the video or reads though the websites. People’s hearts and minds CAN be changed and it is wonderful when you see that happening.

Change does not often happen instantly. We are not all going to wake up tomorrow in a world where every person with a spinal fluid leak is going to get properly diagnosed, treated and fully recover. These conditions are complex and it takes time for understanding, research and practice to filter through.

But we can all play our part!

So today I want to ask sufferers and their families to think about;

  • How could you speak up and tell your story?
  • How can you be part of raising awareness too?

We might not all be able to write blogs, create websites, volunteer for the charities, fund raise or spread the word on the street. But perhaps we could post on social media, share a link, wear a t-shirt, or tell something of our own story.

Or perhaps you could respectfully share with a medical professional a medical paper on leaks, tell them about the UK and US CSF leak charity websites, or send them a link to Dr Carroll’s video.

You never know, they might just take a look especially if you approach it well.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”  – Mother Teresa

Change will only come;
little by little,
step by step,
patient by patient,
doctor by doctor,
hospital by hospital.

By individuals and groups choosing to raise awareness and helping to challenge and transform conventional perspectives and opinions.

Perhaps we can all work together to enable patient and doctor to compassionately help one another to understand this debilitating yet treatable condition. So that even if we have had a tough and difficult journey ourselves, we can seek to build bridges with others that can open lines of communication. That might just change people’s hearts and minds for the future.

That way, we are building a legacy for the future. We are making the road that bit clearer for those following behind.

Mindful of the fact that they may never fully know the difficulty, struggles, sacrifices and battles of those who went before.

“Do not go where the path may lead, go instead where there is no path and leave a trail.” -Ralph Waldo Emerson


For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Here is the link again to Dr Carroll’s video.