The Social Construction of Invisible Illness: Label me up!

A few weeks ago, I went to see my chiropractor. I’ve been seeing him for nearly 8 years now, and I absolutely swear by chiropractic. This guy helped turn me from virtually housebound, to back on stage, singing and dancing, within the space of 3 months, all those years ago. And I’ve not really looked back since.

So, the Saturday following my Fibromyalgia diagnosis I went along to my appointment, and as is usual for us, I updated him on my health, telling him about my most recent diagnosis. His answer was the same as pretty much everyone who knows me, “Well, it’s only confirming what we already knew for the past 6 years.” But he went on, “But don’t go labelling yourself now, ok?” To say I was shocked was a bit of an understatement. What is it with people on about me ‘labelling’ myself recently?

Help!  I have too many labels!

Now don’t get me wrong, I know that in some senses labelling can indeed be a bad thing, and something that should be avoided, especially when these labels are based on assumptions, prejudices and stereotypes. But I have always been of the belief that labels are in fact an undeniable fact of society and should be addressed and even embraced.

As I have mentioned in previous posts, society finds it impossible not to define us all based on certain criteria, and place us into nice little boxes. I’ve also already said that in that context, there isn’t really a nice neat little box for people with disabilities and chronic conditions. So we all have these labels. Some are acceptable – the acceptable labels I have? Mother, daughter, sister, Master of Science, employed, non-smoker and so on. Why is ‘disabled’ or ‘chronically ill’ not an acceptable label? Why is each one of my diagnoses not an acceptable label?

I tried to speak about this with my Mum, herself managing life with a chronic condition (Hypothyroidism). Surprisingly, she agreed with my Chiropractor! I tried to argue the point with her, that labels can be useful, and all the other labels we carry with us every day which are positive, but it was to no avail. Some labels are just bad, apparently. It didn’t help matters when I referred to myself as ‘ill’. I use the term ‘ill’ to collectively describe my conditions because they make me feel, well… ‘ill’ on a daily basis. Mum on the other hand, suggested that like her, I referred to myself as having ‘multiple conditions which [I] manage’. Whilst this is true, it’s a bit of a mouthful. And I have found that the second I say ‘multiple conditions’ it just invites comments and questions, “Well, what conditions?” It seems to me like it’s almost fishing for people to ask questions of you when you put it that way, because how, after such a statement, can you say, “I don’t want to talk about it,” without seeming rude and dramatic? I also tried to argue the point about invisible disabilities, to which my Mum replied, “There’s disabilities and disabilities.” I kind of got what she meant – her reference was to visible vs. Invisible disabilities, and severe vs. less limiting disabilities. Obviously I am in the latter of both categories, but should this mean I am any less entitled to support?

Apparently society thinks so. The label of ‘disability’ conjures up images of wheelchairs and canes, zimmer frames and stairlifts. It does not conjure up the image of what people see when they look at me: a young, single woman, who gets up every morning and drives her son to nursery and herself to work, then comes home, makes tea for her son, baths him, puts him to bed, and sits down and watches EastEnders with tea, biscuits and knitting. That’s essentially my daily routine. I do all that, I rarely deviate, because any more than that is too much. What I omit is the struggle to get out of bed in the morning, the leaning against the wall in the shower to support myself, the taking of medications at the correct times to hold off symptoms and pain, the naps – one when I come home from work, one whilst in the bedroom in the evening waiting for James to fall asleep, the fact that sometimes the tea and biscuits is my evening meal because I am too tired to cook. That’s the part that others don’t see.

In my mind, that’s where the labels become useful. They alert others to the fact that there is something else there, something not seen. When I suggested this to my Dad he agreed with me, “Labels help you to get the assistance you require.” Well put, Dad. I don’t think for a second that either of my parents think that I do not need more help than most people, nor would they ever deny my health issues in any way, but they see ‘managing’ you conditions in different ways. In my view, you cannot ‘manage’ your conditions without assistance, so labels are infinitely useful.

The problem is how labels are interpreted. For many, the label of ‘disabled’ is synonymous with ‘can’t’, it’s defeatist, giving up, useless. I don’t see it that way. I don’t think that I’ve said “I can’t” do something in years, not simply because of my health, anyway. I always try to find workarounds, different ways of doing things or using items differently to help me to carry on as normally as possible, within my limitations. I see disability as doing what you can, to the best of your abilities. I see that in people in real life and across the internet, we’re all just doing what we can, just trying to live. So why is disability such a bad label to carry? Again, it’s simply perception. People assume disability to be the wheelchairs and canes, it makes them uncomfortable. They don’t want to confront it in those with invisible conditions because that’s even more uncomfortable – how can you reconcile the two, a person who outwardly looks fine but they are telling you how much they suffer? And so many invisible conditions are ones that could easily happen to anyone. That thought alone is always enough to make people uncomfortable and even scared.

Personally I embrace my labels. I have recently discovered the joys of the hashtag on Twitter – by simply labelling myself with #EDS I have found more people with Ehlers-Danlos Syndrome to interact with, share experiences and symptoms, and seek reassurance from than in the whole 7 years since my diagnosis. Label yourself as a #spoonie and you’ll find others with other chronic conditions who can also sympathise with you. Interacting with people, normalising my experience, has been fantastic. It always feels so good to say, “Hey, me too!” and not feel like such a freak of nature. For once in my life, I fit in. How can that be bad? Until I got my fibromyalgia label every request I made for pain relief was denied, and I was treated as a narcotic-seeking junkie. Within minutes of my Fibromyalgia being diagnosed I had a prescription in my hand. When those pills didn’t work for me I saw my GP, explained the problem and left a few minutes later with a new prescription for pills that this time do work well for me. A simple label, one word, got me the pain relief that I have needed for over 6 years. How could that possibly be a bad thing?

My labels are badges of honour. I wear them with pride because every day they help me. They help me to get the help and support I need, and they help to remind me of all my achievements, no matter how small. Because everything I achieve with those ‘bad’ labels in situ, is even more of an achievement. My labels keep me going, because I want to prove that I can be more than society suggests I can be with such labels in place. I want people to know those labels are there, because how else can we break the stigma surrounding them? You have to label yourself to prove you are more than that label.

Wednesday’s Child – Part 2: The Summer of ’97

That Summer before I turned 16 was probably the best Summer of my life. Not that I haven’t had good Summers since, just that this was the last Summer where I could truly consider myself to still be ‘healthy’. Well, at least at the beginning of it. I had a lot of fun with Danny, and our mutual friend, Robert, But Danny would frequently miss outings, events and voluntary duties that we were supposed to do together. I just could not understand how he could be ill so often when he always looked and acted so well when I did see him. One of the older volunteers, a lovely man, Lenny, gently explained to me that that was what M.E. was like.

I was confused. When my Dad came to pick me up I told him that Lenny had said Danny had M.E. as well as C.F.S. My Dad explained they were different names for more or less the same thing. Suddenly, things clicked for me – there had been a boy at school with M.E. He had disappeared for a year and eventually came back considerably weakened. I had heard that he had been terribly ill. Now Danny’s absences made sense – if he felt that ill too, no wonder he couldn’t make it to things! I had new-found respect for him, that despite not being at school and having trouble sleeping he still tried.

From around April of 1997 I began getting terrible stomach aches. I also started to feel very run down and tired. I put it down to doing so much, as I was so busy with school and extra-curricular activities – the school play (in which I had a lead role) and volunteering as well. The French Exchange trip loomed. First, our penpals visited us and we spent 10 days on various trips and activities. Towards the end of the stay, a couple of the host families got together to have a farewell party. I remember having a stomach ache all evening, and pictures from that night show me looking pale and pained. As the party went on I just wanted to go home and curl up in bed with a hot water bottle, even though it was May and very warm out! We were due to see our pen pals again in 3 to 4 weeks, when we went to visit them in France.

It was blazingly hot the whole time we were in France, and our schedule was punishing. School started promptly at 8am and my pen friend liked to arrive half an hour earlier to talk with her friends. With the time difference it was effectively 6:30am for me when I got to school, after a 30 minute walk. Then we would go on various outings and tours, which were long and exhausting. It was great to see new parts of the world – this was only my third time abroad and I found I had a taste for foreign travel, but it was physically torturous. When at home with my pen pal I would just sleep and sleep, and the extra outings the family wanted to take me on had to be cancelled as I was such a zombie. My pen pal’s Dad would make comments about how English girls were spoiled, lazy and workshy, like the rest of my fellow countrymen apparently. I didn’t take (much) offence, it was just his way; he hated the English in that stereotypically French way. But all the same, my other friends on the exchange were managing to keep up – why couldn’t I?

It was so very hot, and I was running on less than empty. So it was really no surprise when one day I developed one of my stomach aches and the added heat made it all just too much for me and I collapsed as I was getting up from a seat. Unfortunately, there were a few copycat fainters on the trip and I believe we were all largely treated as hysterical teenage girls. For me though, this incident seemed to open a floodgate, and from then on, even when back in the UK I began to have dizzy spells and fainting episodes which were hugely embarrassing when they happened whilst I was out and about. I began to dread the times when I would get the metallic taste in my mouth, knowing that my vision was about to darken from the outside in and anticipating the sick and shaky feeling that would always linger afterwards.

Finally, one night in July, just days into the Summer holiday, I developed another stomach ache. Laying on te sofa, I couldn’t stand any movement when my younger sister tried to sit down next to me, yelping and complaining as she shifted positions even slightly. My Mum was worried, and when my Dad got home from work they both monitored me. I went to take my usual evening phonecall from Danny, but I was in a foul mood with pain and things quickly descended into an argument, ending with us hanging up on each other. Looking back, I wasn’t as upset as I would have been had I not been in pain. I really was quite angry at the world that evening. As the hours went by I just wanted to take painkillers and go to bed, but I could barely get off the sofa without crying out in pain, walking bent double and clutching my stomach. My parents decided that I needed to see a doctor, instead of my Dad making his usual nightly trip to check on his elderly father.

Having been to both the out of hours doctor and then Accident and Emergency at the hospital in the next town over and put through various tests, getting grumpy with staff constantly poking me, it was confirmed that I had acute appendicitis and needed to have an emergency appendectomy right away. I was whisked off to the operating theatre, appendix removed and returned to the ward within the space of a few hours. I was groggy from the anaesthetic, but aware enough of my Dad reassuring me that the family would be there with me in the morning as soon as I woke up.

All through the night I suffered terrible side effects from the anaesthetic used, pethidine (I have since found out I am intolerant to opioids and opioid based drugs and experience severe side effects from all that I have ever been given). Although my stomach was empty I couldn’t control the awful nausea I felt, and spent the night semi-conscious with my head hanging off the edge of the bed, dry heaving and clutching my stomach in pain. In too much pain to move, the nurse call button placed out of my reach, and completely alone in my ward bay, no-one knew how I was feeling until they came in to check me during the dawn rounds. Finally more comfortable, I was able to fall asleep properly for a while.

When I woke up, feeling understandably fragile, I was disappointed that my family were not there as promised. Because they had not yet arrived I had nothing to occupy me, nothing to wear except my hospital gown, with nothing underneath, and the children’s ward was not geared up to entertain a nearly-16-year-old girl. I grew angrier and angrier that they weren’t there and that the only message I had had passed on to me from a nurse was that they had been ‘held up’.

When they finally arrived, one look at their faces said all I needed to know, “Who’s died?” I asked, weakly. My Dad’s Dad, aka ‘Grandpop’. He had apparently died quite peacefully, in his favourite chair in front of the TV following calling around family the night before. He had been found with his ankles still crossed, so we knew he was unlikely to have suffered. My Dad had found out when his Aunt had called round to see his Dad that morning and found him. Later, my parent explained that as the surgeon had opened me, my appendix was ready to burst. Had I stayed home, taken painkillers and gone to bed as I’d wanted, meaning my Dad would have gone to see his Dad as usual and got caught up, then my chances of developing blood poisoning would have been quite high. As it was, I was being pumped full of intravenous antibiotics, much more than would normally be given. In many ways it was a good thing that my pain was as bad as it was that night.

I was supposed to stay in hospital for at least 3 days following the surgery, to keep receiving iV antibiotics. But in light of the circumstances, and my obvious distress, the surgeon discharged me the next day, with strong oral antibiotics, and strict instructions to rest in bed as much as possible, which I did, enjoying the rest. Obviously I attended my Grandpop’s funeral, and I also stubbornly refused to change an orthodontist’s appointment which ended 15 months of braces for me.

Following this I was able to sit back and relax, and look forward to going on our holiday to Spain, joining another family who we are friends with. As much as I tried to keep up with the activities and outings, my slow recovery was noticed. Despite this, this Summer of recuperation was good for me in other ways. I had time to think, time to plan a strategy for how I was going to handle myself upon my return to school. I probably did a bit of growing up, it was one of those ‘coming of age’ Summers, although not quite as you see them in films.

Don’t call me stupid: Dyslexic traits in long-term ME?

The other night I stayed up probably far later than I should, to watch a documentary on BBC3 called ‘Don’t Call Me Stupid’. Following the former EastEnders actress Kara Tointon as she attempted to gain a deeper insight into her Dyslexia, the documentary proved to be useful, and indeed, thought provoking for me.

Dyslexia has never been that far out of my sphere of experience – my Dad is dyslexic, albeit in his youth it was indeed the norm to call dyslexics ‘stupid’, put them in the bottom stream and in my Dad’s case, deem them too dumb to learn to play a musical instrument. He soon discovered that the only way to survive was to develop his own coping skills, which he used successfully to climb the corporate ladder. So it was not really ever a big deal in our household.

When I was 23 I was starting a new university course, a Postgraduate Diploma, following completing my Undergraduate degree the year previously. I applied for Disabled Student’s Allowance on account of my ME and unlike my undergraduate course, where I received the allowance without fuss, this time I was sent for an assessment. This involved speaking to a nice Disability Support Co-Ordinator at Middlesex University and going through my medical history. I was asked to read some passages, to assess my poor eyesight when the man stopped me.

“Are you dyslexic?” He asked.
“No.” I replied. “But my Dad is.”

He went on to explain that not only could dyslexia run in families, it could also be a permanent side effect from having meningitis. Well, that sounded plausible – I’d already lost part of my hearing and vision to meningitis, why not have my brain rewired too?

He suggested I had an assessment and arranged for an Educational Psychologist to come to my University to assess me. This was quite an exciting event for me. Prior to my interest in Health Psychology, before I had quite so many medical conditions to contend with, I had wanted to be an Educational Psychologist, studying at Glasgow Strathclyde University. Having one come and show me exactly how they performed their assessments was too good an opportunity to miss!

Telling my Dad about the outcome of my assessment and pending appointment with the Psychologist my Dad revealed something that I had no recollection of, “We thought you might be dyslexic when you were younger. The school spoke to us about it.”

Thinking back, I never thought it was odd that I sat in the classroom at break times doing handwriting drills, or that I was taken out of class for remedial tuition. The remedial literacy sessions were short lived, but the maths ones went on a bit longer. I was, and still am, terrible with numbers. Ask me to calculate something without a calculator and I may well end up in tears. The numbers would always just jump all over the place and I could never keep my columns straight, even when using that nifty large squared paper, meaning my answers would always be wrong as I added the wrong numbers together.

I underwent my assessment and the psychologist told me that she did not think I had dyslexia, because my verbal IQ and reasoning was too high. However, when my visual-spatial IQ score was added to the mix my overall IQ dropped by 10 points. From this the only thing she could infer was that I had some form of non-specific visual processing disorder.

Bear with me, I have a point. I will get to it, eventually!

Watching the documentary, Kara described how she viewed words on a page, in pieces, some parts of the page brighter than others and so on. Exactly how I see large portions of text. If I am faced with text like that I struggle to take in any meaning and instead get sleepy. It takes me forever to read books. I think I have read about 3 books in the last 12 months, none of which have been particularly complicated reads. I struggle with Harry Potter, to give an indication of my reading abilities. When I write things, it has always been with a distinct conversational tone. People who know me have said they can actually hear me saying what is written down, and this is how I manage to overcome my writing difficulties. For much of my Undergraduate degree, and later my Diploma, I enlisted my Dad to be my scribe – by dictating my essays to him I could have them written in the space of a few hours. When I sat and typed them myself the task could stretch to days or even weeks. Academic writing is much less conversational and I found it extremely difficult to cope with.

In the documentary, Kara went on to get green filter lenses in a trendy pair of glasses which helped her to read more efficiently. I have also been tested for this related condition, known as Irlen syndrome, and found that I require orange filters in order to read effectively. Unfortunately for me, my current high index prescription precludes coloured lenses, but it has always been on my list to get a pair of coloured lenses as soon as my prescription is more normal following my cornea transplant. The filters stop the words shimmering on the page, and take away the bright and grey spots. You can even download handy programmes for your computer to tint the whole screen, or change the default background colour from white.

Managing through colour is not exactly a new thing for me though. As I said earlier, my Dad developed his own coping skills. I was the same, although I didn’t realise it for many years. What started off as simply switching between pen colours to differentiate between paragraphs more easily soon became full on colour coding. When everyone else would have 1 or 2 pens on the desk at school, I would have at least 10. Blue, pink, green, purple, turquoise, red, black, orange, and every colour of highlighter I could get my hands on. I got a reputation for being ‘anal’. By the time we reached 6th form I eschewed the traditional wide-ruled pads of paper my friends used for narrow-ruled, or better yet, small-squared paper pads. This kept my writing tidier on the page. I also switched to using block capitals for everything. To this day I get complimented on my neat lettering, a result of my endless handwriting drills at primary school. But I am at my most comfortable when writing in block capitals. I never really realised the extend of my ‘coping mechanisms’ until they were all pointed out to me by the psychologist.

But as I get older, I find my problems aren’t as easily overcome. Reading a bedtime story to my son can sometimes be painful in its delivery as I stumble over the words. I used to tell myself it was because of my vision, but even with my nose touching the page I still read in an extremely stilted manner. I am always happy to ‘read’ him his favourites, because I know them by heart and don’t even need to try and read them. Then I can put in expression and do different voices and all sorts. I mentioned earlier I haven’t read many books in the past year. This is because I have to psych myself up to even start reading, and then can only manage a few pages at a time before I switch off again, even with the most gripping of stories. My sister can glance at a page and take in everything in seconds, she has a photographic memory. I find myself going over each sentence two or three times each much of the time.

Bearing in mind that my problems seems to be increasing rather than being managed, and also that whilst my verbal IQ is of such a high level when my standard IQ just falls short of MENSA acceptance levels (it used to be higher, I knew I should have sat the entrance exam when my Dad told me to!) due to my complete lack of visual-spatial ability, I am wondering if this might be an effect of having long term ME?

I see many dyslexic traits in the written communications from fellow PwME, which cannot all be simply put down to ‘brainfog’ or ‘lack of education’ (by which I mean that many PwME of my age have also been unwell since a young age and may have had a sporadic education due to periods of ill health), because they appear almost universal mistakes. A lack of spatial awareness or ability is also commonplace in ME/FM and associated conditions – hence I frequently walk into doors or doorframes when aiming for the space inbetween, or why I cannot manage to use escalators without looking like an idiot (in fact, I’ve never been able to use escalators normally, my parents used to despair when it would take me 10 minutes to get on one, usually close to tears and panicking), and I know I’m not the only one to do that! So do we have impaired information processing as a result of our condition? Is this syndrome affecting our neural plasticity? In other words, is it rewiring our brains beyond the accepted ‘brainfog’?

I’d love to hear from anyone else long-term sick to hear your viewpoint on whether these things may be related. Or not. Have you had problems that have developed or got worse since you became unwell? Do you struggle in the same ways? Differently? Do you also employ coping and management skills to overcome these difficulties?

Whatever the case, the documentary is well worth a watch – “Born Survivors: Don’t call me stupid” is available on BBC iPlayer until Thursday.

“How do you even get out of bed in the morning?”

At work on Wednesday, our student nurse had a migraine. When she felt a bit better she managed to come into the office, looking rather wan, and naturally as a fellow veteran migraine sufferer I commiserated with her, and also marvelled at her ability to come to work at all. That’s dedication for you!

Our conversation turned to health, and our senior colleague also joined in, asking how I was doing. It was the first time I’d had a chance to talk to her since my Fibromyalgia diagnosis, so I let her know about that and my three awful days on Amitriptyline. She’s another who can sympathise, she also has an invisible condition and although she manages it very effectively, she sometimes has bad days, mainly after her treatments.

I was talking to her about my eyesight, about how I need new glasses because my current lenses are two and a half years old and badly worn and scratched, but that I was reluctant to pay for my complex lenses with my transplant coming (hopefully) soon and was desperately trying to hold on. But, I explained, this meant that I wasn’t going to be able to drive to Birmingham for a job assessment/interview next week. This led into talking about said job and how I felt very conflicted over even going for it, it being so far away from my support network and a full time role made me worry about my health.

“Sorry if this sounds rude,” Piped up the student, “But what exactly is…” she trailed off and looked awkward.
“The matter with me?” I volunteered. She looked incredibly relieved, and nodded. So came the big list. That I was first diagnosed with CFS at 17, I corrected myself to add ME (working in a medical environment the term ME is frowned upon, I try to use it when talking about myself to show I do not agree with the NHS’ stance, despite working for them) and was pleasantly surprised when the look of confusion she had when I said ‘CFS’ lifted and she smiled and nodded, “Oh, ME, I’ve heard about that!” Then the Ehlers-Danlos Syndrome, not diagnosed until I was 22, but explained my incredibly complex medical history. My eye condition, re-diagnosed in August and why it entailed a transplant. Hashimoto’s Thyroiditis, diagnosed in September, and last but not least, Fibromyalgia diagnosed just last week after a long battle. Thinking about it, in the last 3 months I’ve had 3 new conditions diagnosed. I hope this is more of the ‘like buses’ analogy, rather than setting a new trend for me – What’s it gonna be this month?!

“Wow,” she said, “How do you even get out of bed in the morning?”
“We often ask her that,” Our senior colleague contributed.

To be honest, I try not to think about it. It’s probably something to do with the influence of my parents – I always used to joke that my Dad could have a limb hanging off and he’d call it a scratch, put a plaster on and go to work. When I was 10 he developed autoimmune Sarcoidosis and was horrendously unwell for seven years, but he kept going, he worked, did DIY, raised his children. It’s only from talking to him since my own health deteriorated (funnily enough at the same time as his improved) that I realised just how ill he really was. He never let on. He was always just my Dad to me. Sure, he lost some weight, and he coughed a lot and complained of sore joints, but I do not recall him ever once taking to his bed, even for a day,

I can’t live up to that, of course, and I don’t believe that anyone should feel that they have to. It’s a personal choice. My Dad retired in March 2008 only to get a new job by the April! That’s who he is. My Mum was diagnosed with Hypothyroidism in 2000. When she was diagnosed she worked a little part time job as an administrator. She could have easily stuck with that, but instead she changed jobs and worked he way up to a management position. They’ve both been hugely inspirational for me.

They’ve never pushed me in any way, but I guess it’s in the genes. For all my limitations I am still hugely ambitious. What little ability I have left I put to as much use as possible, often overdoing it. I should be better at pacing by now, but I really do want it all. It makes me a very antisocial person at times – the main reason I still work is because it IS my social life. I don’t have the energy for out of work friendships. Making good use of my unlimited text messages from my sofa or bed is my social activity outside of work most days.

I don’t like having to get up early when my sleep is always so disrupted, or that James’ nursery fees are more than I earn in a month, simply so I can go to work and not earn enough to pay them. But whilst I still have a choice, I’m choosing. Many have no choice. I’m choosing to go to Birmingham, to fight for this job, just to see how far I can go. If by some stroke of luck I was offered it, although it’s my dream job, I think I would walk away. At this point in my life, just knowing I could do it if I were able to work full time would be enough for me

I get up in the morning because I still largely hide my illnesses. There were three of us having that conversation who all experienced debilitating invisible conditions which we hide in one way or another. We were in a safe space, there was no judgement, only understanding. We shared and listened, and for 20 minutes, we were visible to each other.

When asked how I get out of bed I realised my answer to that has always been to shrug and smile and dismiss it. What a Good Cripple I am. The truth is, some days I don’t know how I do it. Some days I do it by pitching myself out of my bed onto the floor to shock myself enough to get moving. Once I’m moving, had a cup of tea, stood under a scalding shower for 20 minutes to loosen my muscles a little, I’m a bit better, but it is still a mystery to me how I do it. I know it seems from this blog that I never stop talking about my health, but by always carrying on, not complaining, not wanting people to feel uncomfortable, never asking for my needs to be met in my daily life, I am buying into that Good Cripple construct. I’m still being invisible.

So when the student said, “I’m sorry for being nosey. Do you mind talking about this?” My answer was “I don’t mind, the more people that understand that illness is not always visible the better.” It gave me the warm fuzzies just saying it. I don’t mind. If people are willing to listen, to try to understand, then I’m ready to be honest.