Music and Chronic Illness

Through the wonder that is social networking, two days ago I was introduced to the beautiful song “Her Diamonds” by Rob Thomas – a poignant piece inspired by his own wife’s battle with a chronic illness similar to Systemic Lupus Erythematosus (SLE).  And yes, that is Alicia Silverstone in the video.

Unfortunately I can’t embed the video here as embedding has been disabled by YouTube, but have a link!

Now, I readily admit, I do use music to deal with my emotions and where I am in life.  There are always half a dozen or more songs which seem to capture any given moment in my life.  Even if there is no music playing I will invariably have a ‘soundtrack’ going on somewhere in the dark recesses of my mind.  But illness is such a taboo subject, so hard to face that it is rare to find music actually dealing with it. So I substitute – lines, verses, choruses, bridges, refrains, here and there, creating a crazy mash-up of melodies that gets me through.

How about you?  Do you do the same?  Are there particular songs that help you through?  I’d really like to hear what music (if any) helps you.

The Social Construction of Invisible Illnesses: The Sick Role

One of the first things to consider when looking at invisible illness is how society defines illness. Societies all over the world have a natural inclination to compartmentalise their members, creating order that is ideally intended to maximise productivity and optimise operation. So, members who do not fit neatly into the little boxes society prescribes become ‘deviant’.

Sadly, people with longstanding disabilities and chronic (and especially invisible) conditions fall into this ‘deviant’ category. I note here that the term ‘deviant’ is used purely in the sense that we deviate from the ‘norm’, and not because we are somehow criminals! Unlike other ‘deviant’ society members our deviance is not a choice, which is why the terms used in this 60-year old theory are somewhat lacking.

The Sick Role, first outlined by Sociologist Talcott Parsons in 1951, suggests that all members in society have rights and responsibilities, including those who are ill. When we become ill, we are given a temporary reprieve from our daily social obligations and allowed instead to rest. This is where we become ‘deviant’ from our societal roles. But this deviance is allowed in this instance, we are given a hall pass to allow us to take time out, to recuperate.

What this in itself implies, is that we are expected to recuperate in a prescribed amount of time. This time is dependent on the nature of the illness experienced – for a bad cold it may be socially acceptable to remain off work and absolved from duties for one or two days. For something more serious, such as during a course of chemotherapy for cancer, six months or more would not be considered excessive. It helps society to classify sick people, so that people can relate to them and their illness. Herein lies the problem – this theory does not take into consideration those who are permanently disabled and/or chronically ill. Illness is seen as a purely temporary state. This means that when your illness becomes chronic, there is no allowance made – you are still expected to ‘get better’ in a socially accepted timeframe.

For me, this has never been so brilliantly illustrated as by the case of my own ME. When I left school in November 1998 for surgery, expecting a 3 day hospital stay, recuperation throughout December and a return to school fresh for the January term I did not anticipate repeated major complications, combined hospital stays of over one month and not returning to school until some six weeks later than anticipated. Considerably weakened, and obviously still ill, it made me very angry to have people ask on a near constant basis “So, are you better now?”. I felt pressure to return to school, I wanted to see my friends, who were too busy to always come and visit me in my sick room. Did I really feel able to return? If I am honest, the answer is no. I simply felt pressure to conform and to ‘get better’ by returning to my former lifestyle. So when I was diagnosed with ME eight weeks after my resumption of daily life, I was again given a pass. In fact, the consultant who diagnosed me suggested I took a year off school – the ultimate reprieve from my social obligations. But that scared me too much, instead, with support from my parents I used my sick role status to argue my school down to letting me attend half days – at that point almost completely unprecedented. It was almost certainly still too much for me, but for the most part, people were sympathetic.

But over time, that little question started being asked again. People would see me on a rare outing to the shops, or my Mum would mention I had done something extra-curricular, “So is she better then?” It was infuriating and demoralising in equal measure. Once, a friend texted me to ask if I wanted to go swimming with a group of friends. I replied that it would be too much for me. “How about bowling?” She texted back, “Make an effort for once in your life!”

And that’s what it comes down to. When we are ill, when we are in the sick role, we are expected to work towards getting better. To be seen making an effort. For those on the outside it can look like we are sitting around doing nothing day in, day out, instead of what is more likely – a careful regimen of pacing and resting in order to maximise what little we can do. I believe this is why we so often get the “I wish I could stay in bed all day and not go to work” comments – because the sick role is temporary, people making these comments don’t stop to think that while they would enjoy being off work, they have the choice to return to work when they get better, or bored with their situation. For someone with a chronic illness it’s not a choice, and it’s not temporary. And so the chronically ill are seen as not working towards getting better, because they are not improving. And therefore they are again deviant, which leads to the stigmatisation and stereotyping (which I will save for future articles).

Because of this expectation to be healthy, to find a course of treatment and stick to it (yes, that’s what all those helpful recommendations for various ‘cures’ are all about), and to be seen to be doing something to get better, I personally began referring to myself as ‘recovering’ for many, many years. The truth was I had simply found a new baseline, one which allowed me to work part-time and sometimes have a bit of a social life, or study. I have had a very tenuous grip on this for the past 5 years, and I do still have some very bad days – my sickness record is probably shocking. But one thing I find is that by working 4 days a week, my colleagues see me on good and bad days, and I have been able to educate them a little, letting them know how delegitimising “but you don’t look sick” or “you look so well” can be. They can tell when it’s a bad day, notice when I am paler than usual, make me tea, send me home early. They can’t ignore it, because I am right there, in their faces, obviously feeling like crap. It doesn’t always work = this week I said I was worried I would catch a colleague’s cold and was told to just think positively and take some pills (I write this from the sofa, wrapped up, with tissues and tea to hand, because of course I caught that cold, and like every other chronic illness sufferer, a cold on top of everything else just makes everything so much harder!), but for the most part they are willing to listen and learn. I hope that one day that might be the case for everyone.

The sick role is definitely incongruous with chronic and invisible illnesses and disabilities, as is evidenced by the reactions of our society to those who suffer with them. All that can be hoped for is that as a theory it can evolve alongside sociery. I still have hope that one day I will feel able to publically say that I have ME, rather than my current line, which is to say I recovered 5 years ago.

XMRV and Antiviral Treatment

Last night, an old friend and fellow veteran ME sufferer visited me for tea and a catch up. He asked me about the latest on XMRV and when would antiviral treatments become available and appropriate for ME patients (with a confirmed diagnosis of XMRV).

Today I trawled the web and found the following video (In Dutch, with English subtitles) which perfectly sums up exactly what I responded to him:

My reaction to the lastest study of XMRV

“Oh he is just like you were,” my Mum said over the phone, “You always had more than your fair share too.”

Most Mums love it when they are told how much their children resemble them.  But I felt that cold and sick feeling in the pit of my stomach.  Unfortunately Mum wasn’t talking about something positive, like eating habits or friendships, but illness.  James had had a tummy ache and had been cycling between burning hot and freezing cold all night, although now seemingly better, and I was on the phone to my Mum at 8:30 on Tuesday morning trying to work out if I should take the day off work and take him to the doctor, or send him back into the nursery where he’d picked it up from.

In the end I went with my gut reaction to have him checked out.  As it was, it turned out to be a bad day for me too, with a migraine and severe pain, so being off work was good for me.  Of course, as a single Mum there is no-one else to rely on, and despite my own problems we walked down the lane to the Doctor’s Surgery, then later drove to the hospital to drop in a sample to test James for a UTI.

There was that sick feeling again.  UTIs were a hallmark of my early illness, not to mention stomach aches, temperatures and swollen glands just as James had now.  The last thing I want is for him to suffer in the ways that I have.  Generally he is healthy, but he does pick up anything that’s going round, just like I always did.

But with a new study published last week which suggests that the XMRV virus is present in 86.5% of ME/CFS sufferers, and the previous knowledge that as a retrovirus it being transmissible, like the more well-known retrovirus in its class, HIV, through bodily fluids, the worry is there that IF ME/CFS is indeed caused by XMRV, that I have set my son up for a lifetime of health issues too.  Hypothetically speaking, by giving my child ‘the best start’ and breastfeeding him, if I am in that subset of sufferers who have XMRV, I have potentially transmitted it to him.

Of course at this time, there is no way of knowing.  Perhaps I shouldn’t worry.  But while it’s OK for me to go through what I do, it is in no way, shape, or form acceptable for him to go through a fraction of what I have.  I am the Mama Bear, and I will protect my young at all costs, even when the enemy is my own self.  If faced with the choice again (as much as my choice with James was either keep my unplanned pregnancy or terminate it and not a choice to get pregnant in the first place) I would do it all again in a heartbeat, but it won’t stop the fear that comes with the new knowledge that a virus may be involved.

This is still a very hypothetical situation, but do you think the issue of XMRV, as more becomes known, will cause questions regarding transmission, and indeed, having children?  Bearing in mind transmission would be more likely from mother to child, as in the case of HIV infections in families, does this alter your viewpoint on having a family at all?  Over the years I have encountered women at either end of the spectrum – those choosing not to have children due to issues or heredity, to the more blasé attitude that we can pass on a predisposition to almost every condition, so why worry about just one (I admit to being in the latter camp).  Women, would you have a child if you might be infected?  Men, would you be willing to take a risk if your girlfriend/partner/wife was a potential carrier of XMRV?

Come and discuss this article in the forum and contribute to follow up articles!

The Social Construction of Invisible Conditions

“But we can’t make assumptions,” I said, pointing my pen in hope of adding weight to my point, “What about the disabled? What about single mothers?”

Inwardly I cringed, now it was increasingly likely that the other 49 people in the lecture hall thought I was a disabled single mother on her soapbox. It wasn’t true at the time, but it’s strange where you end up.  Apparently these were the questions that the lecturer wanted to be asked. I don’t even remember what her original point was, but it was the first lecture I had had with this wonderful lady, who I found terrifying and wonderful in equal measure, and I wanted to impress her. Thankfully, my questioning singled me out, and when I approached her and asked her to become my supervisor she was only too happy to oblige. So began my love affair with the discipline known as Social Constructionism.

Social Constructionism is the psychological/sociological approach that holds that objects develop meaning through their social contexts – that concepts are defined by how our culture reacts to them. It is also known as Critical Social Psychology and Feminist Social Psychology. From the beginning I felt that this was an ideal way to examine ME in our society, because it is often defined in different ways depending on which group is approaching it.

Naturally my ensuing project used this approach when examining how young women discursively constructed their experiences of having ME. What emerged was an extremely eye opening experience for me. Whilst the general opinion of people with ME/CFS/FM and other related conditions is often portrayed in extremely negative terms, and the typical sufferer as someone who is lazy, scared, depressed or angry, what people with these conditions wanted above all else was a fairer portrayal. Interestingly with a move away from the focus on the severely affected, because whilst this is excellent for the shock factor in raising awareness, it does not help the sufferers who are more likely to be encountered in society – ie. Those who are well enough to work, study or just socialise. This can lead to Joe Public formulating opinions that these people they encounter are not really ill, or worse, that the people that they read about or see in the media are suffering from something that is indeed “All in the mind”. Not a helpful situation for any sufferer. This can exacerbate the stigma already associated with the condition, perpetuating the stereotype of the ‘malingerer’. And with this stigma comes a phenomenon known as delegitimation – where illness experience is questioned and the legitimacy of the condition loses ground rapidly.

What to sufferers do in this situation? Interestingly, those I have talked to say they just stop talking about it. I can relate to this, for years I referred to myself as ‘recovering’ when talking to people. This seemed to give me breathing space to answer any questions because they were then phrased in a way that made them not about me. I could talk about “Others” and not have to say “I”. Even when the experiences I described were my own, it took the sting out of the tail at least a little. Gradually the questions ceased, throwing others a bone called ‘recovery’ apparently satisfied the attitude that I was ‘doing something’ to ‘get better’ when the truth was I just stuck to my known limits and didn’t really ‘recover’ at all.  And then one day I just didn’t need to talk about it anymore.

It was these experiences, knowing that what I thought, felt and experienced was shared, at least by a handful of others, that made me want to start Visible Invisibility. I wanted to bring it to the forefront, that there is more to Invisible illnesses than what the media chooses to show us (If you will excuse the pun there!). I wanted to change the way that people relate to people with invisible conditions, including how people relate to themselves. I have found a great deal of strength in focusing on my abilities rather than my limitations, and empowerment has helped me cope far better than any drug or pacing ever has. It is more than positive thinking, it’s about taking as much control as you can, even when there are some elements that you are just never going to be able to control.

I am planning to write a series of posts on various aspects of the social construction of invisible conditions. Obviously the focus at this point will be on the multiple invisible conditions that I personally experience, but I welcome contributions from anyone who has a different experience. It has to be said, that sometimes the things that I say may seem unpalatable, part of my silence on the matter for so long has been that I am fully aware that I do not always hold the same views as the majority of people. But I am willing to risk it now. I invite constructive criticism, I want debate. I feel that this is the only way things are going to progress. Everyone deserves a voice, not just the most ‘media friendly’ cases and if that makes for uncomfortable reading at times, I want to examine WHY it is uncomfortable.

Perhaps then we can deconstruct invisible conditions as they currently are, and reconstruct them how we want them to be.

Wednesday’s Child – Part 1: The Beginnings

By Shelley

My health has always been so complex, so intertwined are my various conditions, that it is impossible to simply extricate my experience of having M.E. from everything else.  In order to effectively communicate my life with M.E. it is necessary to go right back to the very beginning.

Towards the end of her pregnancy with me, my Mum was told her placenta was failing and that it was necessary to induce labour.  These days we know this condition as Pre-Eclampsia Toxaemia, but back then Doctors still subscribed to the method of telling patients as little as possible in an attempt to minimise worry.  Nine days before my due date, on a Wednesday in late October, I was born weighing under 6lbs, floppy and purple in colour.  I was duly whisked off to the Special Care Unit to be warmed up and looked after.

Although technically full term, the extent of my developmental problems soon became known – I had no sucking reflex and needed to be fed by nasogastric tube and I had a small atrial-septal defect (aka a ‘hole in the heart’).  The paediatricians decided not to treat this as it was only a small defect, but warned my parents that I would never be an athlete and would always be ‘delicate’.  At 6 weeks old I had my first surgery, for double inguinal hernias, one of which was strangulating one of my ovaries, “She must have been in agony,” the surgeon told my parents.  Finally, after a turbulent first 8 weeks of life, I was discharged from Westminster Children’s Hospital and able to go home on Christmas Day, 1981.

October/November 1981

After that, things were fairly ‘normal’, although my Mum felt I slept a lot more than a normal baby would – she would frequently have to wake me in order to feed me or else I would miss feeds entirely and be miserable with hunger when I finally woke up.  But this wasn’t without problems – indeed, by waking me for feeds I would be miserable for being woken up and would only eat a little before wanting to sleep again.  As I hit my toddler years it was not unheard of for me to fall asleep face-down in my food.  I was frequently unwell, and to boost my immune system, our GP would give me vitamin injections to try and build me up.  However, I bruised easily, and when I was subsequently due immunisations, these bruises were noticed and my Mum questioned by the doctor as to how I got them, even though he himself had administered them!

By the time I was three my constant tiredness and illnesses was causing concern and I was sent for a blood test to see if I had Glandular Fever (aka Epstein Barr Virus, aka Mononucleosis).  This is my earliest memory – sitting in the huge chair in the cubicle, with two nice ladies in white coats and my Daddy.  At first they couldn’t get blood; my vein collapsed as they still do to this day.  But they were successful with the other arm, and I came out of there rather proud of my two circular plasters with pictures of my choosing drawn on by the phlebotomist – one of a pig, and one of a smiley face, apparently representing my Dad.  Glandular fever was never diagnosed, and again my tiredness was just put down to my being ‘delicate’.

In the Spring of 1987, when I was 5 years old, I contracted Rubella.  This was only one year before the MMR vaccine was licensed in the UK, and had it been available sooner I might not have been left with so many problems.  I was taken ill in the cinema, my Dad had taken me to see Disney’s “The Fox and The Hound” for a half-term treat.  To this day I cannot watch that film without feeling sick and headachy because the associated memory is so strong.  The rubella itself was not so bad, but in the days following my illness I became extremely unwell.  One morning when I could barely open my eyes, with a pounding headache and wailing at the pain caused by the light coming through my curtains, my parents called the GP out to our house.  After a brief examination, he asked my parents if they had any idea what might be wrong.  “Meningitis?” They suggested.  He confirmed this and offered to call for an ambulance, but it was decided that it would be quicker to just bundle me into the car and drive the short distance to the city hospital.

I don’t remember much about this time as I felt so ill.  I remember having a lumbar puncture and the room being crowded with medical people – certainly, my parents have told me how scary it was to see so many people trooping into the room whilst they had to wait outside, with it being implied that everyone was there for the sole purpose of holding me down.  As it was, I didn’t have the energy to try and fight, I just lay there.  One of the doctors offered me his fingers to squeeze; my little hand barely went around 2 of his huge fingers, but he did a great job of yelping and pretending I was squeezing too hard, distracting me from what was being done to my spine.  Thankfully my case was viral rather than the often fatal bacterial meningitis, and although I needed to stay in isolation in the hospital for two weeks, I went home to spend the rest of the Summer recovering.  I think in total I was off school for around 6 weeks before the Summer holiday started.

One might think that compared to the time bomb that is bacterial meningitis, viral meningitis is no big deal.  However, although not fatal, viral meningitis can cause neurological damage and lifelong side effects.  I did not escape this.  Following my recovery I underwent tests to determine the extent of any damage I may have suffered.  I was found to have sensorineural hearing loss in my left ear – not enough to be considered deaf, but I had lost the ability to hear several tones in the normal conversational range.  It was explained to us that I would always have trouble hearing conversations in crowded environments and this has indeed always been the case.  Strategic positioning and lip reading has helped me to cope, but I didn’t even realise I had learned to lip read until a few years ago when I couldn’t understand a thing someone was saying when I wasn’t wearing my glasses!  I also lost a part of my peripheral vision in my left eye, but the worst side effect of all, debilitating me the most over all the years since then has been migraines.

From this point on I didn’t have any acute medical crises, but it was a slow, steady stream of illnesses over the years.  I always loved school and would fight tooth and nail to go – one day when I was around 7 I begged my Mum to take me in despite feeling very sick.  She agreed and came in to speak to the teacher, but as we were standing there I dry heaved, and the teacher angrily turned on me and spat that she did not have the facilities for little girls to be sick all over her classroom.  Harsh, but it was true and it did make me think twice about going to school when ill in the future, although this caused its own set of problems.  My Mum vividly remembers how she would arrive at the school gates always worried as to what state she would find me in on any given day, her heart sinking and feeling sick when she would see me walking slowly up the school path, my face crumpled and grey with pain as I suffered yet another migraine, knowing that I would need to go straight to bed when I got home and would likely have a terrible night.  The school was not particularly sympathetic, believing that young children could not suffer with migraines.  One afternoon when I was 10, my head began to pound and I remember describing the pain to the school secretary as “like something is cutting slices out of my brain”.  She laughed and sent me on my way to class, saying I’d forget about it once I was doing my afternoon lesson.  But I didn’t, and begged my teacher for some fresh air.  He was a nice man, who propped the door open for me and put a large comfy chair by it so that I could curl up and breathe the air to try and quell the rising nausea.  Nothing was working though, and I walked over to him to ask for a cup of water.  He probably thought I was attention seeking, as he started to say, “Oh, I don’t think water will help if you feel sick…” but got no further in his recommendation, as I wretched and nearly threw up on his shoes.  It was sheer will power that propelled me across the classroom to the nearest sink, where I threw up and promptly sank to my knees.  That was only the second time I can ever remember being sent home from school due to a migraine, although there may have been more times that I can’t remember. Then there were the many sick days being spent hanging out at my parents’ respective workplaces, and, as I got older, painting in my room with the radio on as I battled with a constant barrage of colds, migraines, ear and chest infections.   I began to develop a reputation with the school staff for being a hypochondriac, and my parents for being overprotective.  This was not helped by the well known fact that due to my more obvious differences I was bullied by many of my classmates.  This led to the conclusion being drawn by the staff that I must be school phobic.

Finally I started secondary school.  I chose to go to a school slightly further away where there were only 3 others from my class attending, hoping that this would stop the bullying.  Sadly, one of them, a right madam at the time, gleefully revealed my history on day 1 and it all started again.  I’m sure it wasn’t entirely down to this revelation, although maybe I could have held it off for a bit longer if she had held her tongue.  I wasn’t without friends though, and I soon surrounded myself with a core group of friends, some of whom I am still friends with to this day.

I remember being about 12 when the next set of problems arose.  There were lots of steps around the school and I remember my legs feeling incredibly shaky and sore as I walked up and down them.  Once or twice they even gave way completely underneath me as I reached the top or bottom of the stairs.  At the time I felt it wasn’t normal, but was at loss as to what it was.  I was no athlete, but I always felt like I’d just done a hard workout.  One time, whilst visiting with friends in the West Country my legs gave way whilst walking up a gentle incline.  For no more than 30 seconds my legs just would not work.  At the time I just laughed it off – it was at the height of the BSE crisis, so I made jokes about having ‘Mad Cow Disease’.  But it scared me enough to play on my mind, and for it to remain etched on my memory.  Finally one day when I was 14 it happened while walking down a steep flight of concrete steps at school, and down I went, ripping my tights, and my legs, to shreds in the process.

Things continued in this vein until I turned 15.  The bullying I was experiencing intensified until I felt so unable to cope that one day I simply went AWOL.  I’m still not sure why I no longer felt able to talk to anyone, but I had simply lost faith in people’s efforts to try and help me, including my own.  I just didn’t want to be there, so I went somewhere else.  And no, I don’t recommend sleeping on park benches!  Finally though, I got some very good support, moved forms and some classes and, as gossip is always rife in schools, word got about and people backed off a little.  Of course, I now had a reputation for being somewhat crazy, but at the time that was a vast improvement!

It was around this time that I met Danny*.  We were both volunteers for an international humanitarian organisation and quickly became friends.  He was nearly 2 years older than me and seemed so grown up to me.  He was ill with a condition he told me was called Chronic Fatigue Syndrome and was no longer in school.  The tragic, wasting illness he described to me sounded very romantic and glamorous to my extremely naive self, but at that point my understanding was as limited as most people’s.

*Names have been changed.

Contribute!

Visibile Invisibility Wants YOU!

I Need You!

This blog is interactive; a blank canvas to paint a picture of ME/CFS in the real world, unedited by journalists and TV editors.  So I welcome all contributions on issues you feel are important to the promotion of ME/CFS awareness or to the creation of a shared resource for others.

I’m looking for one-off articles on particular issues close to your heart, stories of experiences you have had, serialised ‘life stories’, particular symptoms you have, stories of recoveries, treatments you’ve tried, articles about you from magazines/newspapers, memorable posts you’ve made on your own blog, awareness videos you’ve made and anything else you can think of.

Even if you are unable to write a long (or short!) article your input is still hugely important.  Please join the fora at http://visibleinvisibility.freeforums.org and get involved – I’ve set up discussions on particular subjects for you to contribute to but also feel free to set up your own discussions and suggest ideas for where we can take this.  It’s your resource, it’s your voice.

Please email any submissions to visibleinvisibility@gmail.com