What are your aims with this appointment?

For a while now I have been moaning that my neck is sore / hurts / agony, take your pick. Last week I had blood tests to see if I was suffering from nutritional deficiencies and that is what was causing the numbness / pins and needles in my arms and face. Today I finally got to see a doctor. It was a long wait as with hubby’s hours it is easier if I can book an appointment on his day off, rather than have him come out of work and take me. It was actually getting the appointment to have my bloods taken that took the time to organise. It would appear Tuesday is a popular day. I then had to have the doctor’s appointment a week later. As luck would have it my neck actually wasn’t too sore today, the day I would finally see the doctor.

As this appointment was needed quickly ( although three weeks was three weeks too long really) I decided to take pot luck. I usually try to see the same doctor so there is some continuity of care and they have a basic idea of what is going on. However I was feeling very let down after my appointment in July where my neck pain was put down to stress. Now I was under a great deal of stress at the time mum had been diagnosed with cancer and there were other things going on in the background. So it would be an easy diagnosis to come to but even then I did come away from the appointment thinking I really should have been examined before this was written off as stress. It makes me worry that if I saw that doctor with chest pain that again it would be written off as stress when I could be having a heart attack. It’s not a nice situation to be in when you doubt your doctors clinical judgement. They are supposed to be the experts and be on your side, yet when you get written off as a basket case due to stress, it makes you not want to fight. Which is what I should have done because maybe I wouldn’t be in as much pain as I am now.

I will be the first to admit that yes I have been having some mental health struggles this year due to losing Willow and so many close friends and family in such a short space of time. I also went through a great deal of stress in the summer. I understand completely that mental health issues can manifest as physical issues. Yet the diagnosis of stress or anxiety or depression should only be given after an examination to check that there is nothing mechanically wrong. That didn’t happen during my appointment in July and I am angry about it. I am angry at myself for not asking the doctor why he or she felt that my symptoms of numb hands and neck pain didn’t warrant an examination. I understand that doctors especially gp’s are under enormous pressure, especially with health budgets being slashed, Don’t believe what the government tells you when it says its spending more in real terms its less money and our health service is drowning because of it. Just to make sure if this government stays in power when it suggests privatisation people will believe its the only thing to save our NHS and people like me will have no access to healthcare as we won’t be able to afford the insurance premiums. That’s my political rant over, I don’t do politics very often here but it needs said.

Anyway as usual I went off on a tangent, it makes me really angry when doctors are lazy and use a mental health diagnosis against a patient, which I feel is what happened to me in July. My notes say I am being treated for anxiety and depression, my mother has just been diagnosed with cancer so of course my physical symptoms are a manifestation of that. See how easy it is for a doctor to disregard real symptoms? The sad thing is people with anxiety and depression don’t have the energy to fight that kind of lazy doctoring. That was the position I was in then. I was happy to go along with what the doctor said because I trusted them. I am angry because they disregarded the Hippocratic oath of first do no harm. By brushing off my symptoms of stress they left me open to harm. I could have been suffering from a nutritional deficiency like B12 deficiency, a blood clot, vasculitis   a pinched nerve. However that doctor would never know as they were convinced it was stress and an increased dose of amiltriptyline would do the trick.

Today I was dreading my appointment, my mind was racing, was I going to be dismissed again as being stressed? Or would this doctor take the time to examine me?  I know doctors make mistakes and they are only human but a friend of mine almost died from meningitis after a doctor didn’t examine him. His wife found him unconscious in their home. If she hadn’t come home early from work he would have been dead. I had worked out through google and the fact that I have an ounce of common sense that the numb / pins and needles in my arms and face were being caused by a pinched nerve. Stress does not disappear when you put on a soft neck collar. Armed with this information plus the discharge notes from 2016 that contain the radiographers report from my MRI which says I have reversed cervical lordosis. I was ready to do battle and push for a diagnosis.

Why is it when you are prepared for a fight you never get one? Is it because you are giving off the don’t fuck with me vibes? I don’t know. This doctor examined me, so thoroughly that I have been in an awful lot of pain for the remainder of the day. I can’t complain about that at least this time I was taken seriously. However something they said really threw me, after they examined me they asked ” and what are your aims for this appointment?”. I have to say this really threw me, looking back now I wish I’d said ” well my aim is that I get a fucking diagnosis, after all you’re the doctor”. But I imagine that wouldn’t have gone down well and I may be looking for another healthcare provider if I had. But seriously what kind of question is that? That’s business speak and that has no place in an NHS doctors appointment. Why ask that question? Had I not had years of experience as a manager I may have found myself at a loss for words. Why do most people go to the doctors? To get help? Support? Advice? A diagnosis perhaps? Did they think I was going to say ” I want you to wave a magic wand and make my pain go away?” Did they think after years of dealing with doctors that I would have unrealistic expectations? I have Ehlers Danlos Syndrome I have learnt to expect nothing from a doctor other than a shoulder shrug at best. As you may be able to tell this question ” and what are your aims for this appointment” has really bloody annoyed me.

I was expecting at some point they were going to ask me to complete a PDP ( personal development plan) with SMART objectives Specific, Measurable, Achievable, Realistic, Targets. Or maybe they would have me complete a Root Cause Analysis so we could get to the bottom of what was triggering my neck pain. You see I did 18 years of bullshit management speak. To my shame I taught this shit to up and coming managers in a previous life. It has no place in the NHS as I am a patient not a customer, it has no place in an appointment because all I expect in an appointment is for the doctor to do their job. I have no idea what you will suggest because I am not a mind reader, I thought perhaps you might say I need an X-ray or an MRI or maybe even physio but all I wanted from you was a plan. I don’t know what your other patients want from you but from this patient to you please stop asking that question or think of something else to say. I get that some patients may come in expecting top-notch state of the art care like they see on Holby City  / Greys Anatomy/ any other popular hospital drama and your job is to manage unrealistic expectations. I don’t and that question has really annoyed me ( no shit Rach, I can hear you all saying!).

Now some of you may think that I am over reacting to this innocent question but to me it was a loaded question. I don’t doubt that this doctor had my best interests at heart, they after all discovered that I have altered sensation in my left arm and areas of complete numbness, they also have given the diagnosis of a pinched nerve in my neck. Which was the same conclusion I had come to. To me the question could be one asked by someone trying to figure out what the bare minimum is that they will get away with providing . Call me cynical but after having to do battle with numerous doctors over the years I know that cost is coming into clinical decisions more and more. It can’t be helped when the purse strings have been tightened so much that even targets for patients with cancer are being missed by the majority of NHS hospitals. If  my aim was to have my pain reduced that’s a quick win as they could give me a prescription for pain meds, if I wanted a referral to a spinal surgeon then my expectations would have to be managed and ( as I know) physio would have to be tried first. As it is I want to avoid surgery on my neck at all costs. To me the risk are just too high, that unless I am completely incapacitated by pain,  it’s not an option I want to go for. 

Having seen a spinal surgeon before I know they like you to try all options before you go for surgery and I am happy with that. Physio treatment in 2014 or 2015 meant I avoided a spinal fusion. I know that without having jumped through that hoop any referral to see a surgeon would be rejected by the hospital because all non surgical routes had not been explored. 

I have declined using the NHS physio team as unfortunately they are utterly useless when it comes to dealing with people with EDS. The last NHS physio I saw was supposed to be an expert on the condition and I could have written what she knew about EDS could have been written on the back of a postage stamp. She became totally fixated on my wheelchair, so none of the exercises were there to help the problem I was seeing her for but more to get me walking rather than using a wheelchair. I use a wheelchair due to the fact I faint without warning which leave me at a serious risk for a head injury, I also dislocate my knees, hips, ankles and spine when I walk more than a few metres. I also develop bursitis in my hips if I walk too much ( too much being more than a few metres). I had to give up walking my dogs in 2008 as I kept waking up on Woodbury common bleeding not knowing what had happened to me and the dogs wandering down the path in front of me. Thankfully the doctor I saw today was horrified at this physios dangerous fixation and agreed with me that preventing head injury and pain was imperative. Someone who was supposed to be an expert in EDS and PoTs should have known that. Hence why I am incredibly sceptical as to who gave this physio the title of an EDS expert because I have more knowledge than they do.

So I am going back to the private physio I saw in 2014 and had fantastic results with. It is incredibly expensive but I am hopeful if anyone can help me avoid spinal surgery Jane will. I hate using private instead of the NHS but I am afraid NHS appointments are too rushed. I need longer than 15 minutes, I need someone who will work with me and will admit that they know nothing about the condition rather than pretend they are an expert. It also means I wont have to travel 30 minutes to an appointment which will exhaust me before I even get there. Or the unrealistic expectation that I can go three times a week, when I don’t have a driving licence and can’t manage public transport alone as my wheelchair is attendant pushed how am I supposed to get there? Because I am a paying customer there I am  treated in a much better way and they understand that there us a life outside of the health service something which some NHS staff struggle to understand. I am incredibly lucky that I am in the position where currently I can afford to pay for private treatment but it will still put a strain on my finances.

So I wonder what will be the next go to question at any future gp’s appointment? As long as it isn’t “and what do you want me to do about it?” I think I’ll cope!

Everyday Sexism

Sexism and sex discrimination is believed by many to rarely happen these days. We pride ourselves as a society as being more educated and more accepting than ever before however I believe the reverse is true. Things that were common before the Sex Discrimination Act was enacted are on the rise and going unchecked. I don’t know if this is a backlash against the perceived threat of feminism or if it is just that people know that its victims rarely if ever speak out about it? 

Sexism and discrimination exists throughout society. There is no area of life where women are not confronted by it. Medicine is an area where women are regularly subjected to outdated attitudes. On my long journey to get a diagnosis it was suggested to me that. I was feigning my illness because I was jealous that my sister was having a baby. The fact that my husband and I had chosen not to have children was never even asked about. It was assumed because I was a woman I wanted a child. Due to the doctor being unable to discover what was wrong with me my symptoms were written off as psychological. 

Females wait for longer for a diagnosis than their male counterparts in many areas of medicine, even in areas in which women are three times more likely to suffer from a condition such as autoimmune diseases. Medicine has been traditionally taught looking at the male anatomy only, in this small article here a doctor goes on to explain that women are much more than just “boobs and tubes”. Diseases affect men and women differently however this area of medical research still has its detractors. Men and women get sick in different ways and present in different ways as this article shows. 

If we constantly exclude 50% of the population how can we advance as a society. I am not about burning bras, although you will know from a previous blog post I did set one on fire accidentally recently! I don’t believe that men are anti-women but too many of our put downs are gender based. We are told to “man up”, “stop acting like a big girls blouse”, “put your big girl pants on”, “stop being a girl”. These phrases reinforce that men are strong and women are weak. Men are praised for their work, women are praised for their looks. It is so culturally ingrained in us that even those of us who fight against it use such phrases and repeat the same patterns without thinking.

A good example of our acceptance of everyday sexism is our own Prime minister David Cameron, whilst at Prime minister’s question time he told  Angela Eagle MP to “calm down dear”? Would he have said the same to a man? I am sure the campaign by the media showing us thinner and thinner female celebrities is a campaign for women to disappear in a puff of smoke.  A prime example of unattainable body types for women here from an advert that has been banned in France, in an article from The Guardian.

Having watched the TV series Mad Men, initially was horrified to see the sexual harassment / sex discrimination the women portrayed had to put up with. I have heard many TV commentators say how good it is that things have changed with the implementation of the 1975 Sex discrimination Act which made it illegal to treat women in the workplace any differently from men. I hate to break it to you but discrimination on the grounds of sex is still alive and well.  All too often sex discrimination goes hand in hand with sexual harassment. I believe sex discrimination  and the sexual harassment of women in the workplace is a widespread problem. Which is much under reported. Even less reported is the sexual harassment of men by women.

Sexism / sex discrimination is not confined the workplace but all over social media. Women on social media are being subjected to rape threats, threats of violence, even murder purely for campaigning on issues they feel passionate about. What is even worse is that some of the perpetrators of these threats are women. Why do so many people believe that discrimination / sexual harassment is ok?<

The staff structure in Mad Men, where the majority of management positions are held by men and the occasional stereotypical  management roles are held by women, is the same structure of most businesses today. Women, still as a majority have the part-time roles and hold the stereotypical management roles, such as HR managers. It is slowly changing with more women becoming managers however the more senior and executive roles are still being held by men. It seems odd with businesses mainly employing females would have entire management structures made up by men. More men seem to be promoted from within than women, despite women making up a larger section of the work force. How is that possible, why are so many talented women being sidelined?

I never experienced blatant sexism until I joined the workforce age 16 as a Saturday girl. I was completely unprepared for the sheer scale of it and the way it was seen as acceptable by the older more senior members of the work force, who were both male and female. There were around 15-20 Saturday girls when I joined my place of work. My eyes were soon opened to the way the male managers conducted themselves. I had believed naively that this kind of behaviour was a thing of the past.

There was a married predatory manager that liked to stalk the young female members of the work force in the warehouse where they would be alone with essentially no witnesses. Luckily one of the girls I had made friends with warned me about his antics straight off. He would pursue each victim in turn, he was basically looking for an  extramarital affair, he did not realise he was a topic of conversation in the canteen, his actions laughed at. He was as us young girls called him a sad old man. He had a thing for redheads and blonde’s, Jane (name changed to protect her identity) fell into this category as did I.

Unfortunately one of my jobs on a Saturday morning was to process the waste that had accrued from the night before. It meant I spent a fair amount of time alone in a dimly lit section of the warehouse where “Peter” liked to lurk. Peter tried it on with me a few times, I was lucky as I managed to rebuff his amorous advances. Jane had not been so lucky and was starting to feel physically sick at the thought of his advances. She would actively avoid wherever possible going into the warehouse. Due to our age, inexperience and the unapproachability of the senior managers, none of us reported his behaviour to the higher up managers. We had mentioned it to a supervisor (female), who told us we were flattering ourselves and should stop encouraging him. Jane left shortly after having had one too many encounters with Peter chasing her through the building.

This wasn’t the only sexual harassment I was subjected to in the workplace, whilst still legally a child. This time it was much more serious leaving me frightened to go to work and being caught alone with the perpetrator. I managed to pluck up the courage to speak to a member of the management team (male) who I felt comfortable with, who immediately took me to the HR managers office. I told them what had been happening, I was told not to be alone with him and to stop encouraging him. Victim shaming went on even then, it couldn’t be that this man was just a sexual predator who preyed on young girls / women, it had to be our fault for egging him on.

The older I got the worse the sexist behaviour became, when I moved to another branch I found the behaviour there even worse. During my first day there I heard myself being discussed by two males, I never did find out who they were. The conversation went as follows “have you met the new manager?” to which the other male replied “yeah”, the first male then said ” I can’t imagine why she’s been hired”. I was really disgusted by this but what could I do? It was the first day of my new job, I didn’t want to rock the boat.

It would only get worse, when at my tea break later in the afternoon I was asked by a senior management trainee “if my cuffs matched my collar?”. I had never heard that expression before, simply because no one I knew was that vulgar or crude. I had to ask them what they meant, to which they explained that they were asking did my blonde hair on my head, match my pubic hair. I was horrified, this was my introduction to the branch and already I was not being judged on what I could do but how I looked. I am ashamed to admit I laughed along with it, there were other older females present in the group and not one of them stood up for me, it was just accepted as “banter”. Banter doesn’t make you feel physically repulsed, however having already overheard the earlier conversation, I realised the attitude towards women was widespread throughout all levels of staff. The older women brushed it off as boys will be boys. It made me think do you ever hear the expression girls will be girls?

During my tour around the building I was shown inside a large fridge and hanging from the ceiling by a noose was a naked Barbie Doll. I asked the person showing me around what this was, having never seen anything like this in my life, not even at my last place at work and was informed “It’s the department mascot”. Every member of the management team knew about the “mascot” but no one did anything about it. Yet displaying pornographic pictures of women was against company policy. Unsurprisingly it belonged to the manager who had asked about my cuffs and collar. I quickly realised that women were seen as conquests and there to be ridiculed. Company policy was seen as very black and white, Barbie was not a picture therefore had not fallen foul of any company rules.

Within the first six weeks of being there I discovered a blatant case of sex discrimination. A woman was carrying out exactly the same job as a man, covering his holidays and working unsupervised was being paid a lesser amount than her male counterpart. She had been performing this job for years. Should she had wished to take the company to an employment tribunal, she would have won.There was no reasonable defence  or excuse for this situation other than it was a cost cutting exercise. When I raised this with my boss (male) I was made to feel like I had done something wrong. I was told I was deliberately causing trouble and not to tell the woman involved that she was being paid less than the man. It was the woman who had raised it with me. She had informed many managers over the years but no one had taken any action. With the bit between my teeth I relentlessly pursued this, making enemies left right and centre. In the end she was awarded the same rate of pay but the cheapskates refused to give her any of the back pay she so rightly deserved. I am sure there were many other cases of this going on, whether it was a deliberate case of sex discrimination or just keeping the cost of the payroll down, it can not be excused.

There were so many incidents over the first few years of working there that I started to become immune to it. I gave as good as I got but as the youngest member of the management team I shouldn’t have had to. My male boss should have been stopping it, he condoned the behaviour by doing nothing about it. As is usual with people like that due to being able to turn a blind eye he was promoted and moved on.

I was told that my role was purely ornamental by a senior manager , asked to tell another male manager what colour the bra I was wearing was before he would give me vital information for me to be able to perform my job. I was propositioned for sex on more occasions than I can remember. This was all seen as appropriate behaviour, when sexual advances were rejected the atmosphere could become hostile, suddenly faults were found with my work, documents were stolen from my in-tray and emails were mysteriously deleted. I knew that shagging around would lead to my advancement (I was told often enough) but I have never been that type of person.

Things slowly started getting better as the old guard moved on, promoted obviously. There were still occasions where I could be floored by the attitudes of male staff. A few months before I got married I was asked in all seriousness by a senior member of the management team as to “when are you fucking off and having babies?”. The female heavily pregnant manager sat beside me laughed at this. I was outraged and told him that what he had just said was wholly inappropriate. I was also asked by another member of the management team a month or so before my wedding if I “wanted one last fling?”

This kind of behaviour isn’t flattering, I didn’t return home and tell my soon to be husband I was so happy to be sexually propositioned again at work. I found to my cost it was pointless complaining about these managers behaviour due to the treatment I had received when complaining about it years before. You were made to feel that you had encouraged it or worse still you were flat-out disbelieved and told you weren’t that attractive. I was told by a female manager that she couldn’t see how I was being sexually harassed as she was far prettier than me and it wasn’t happening to her.

I have been out of the workforce for seven years but have kept in touch with co-workers. I regularly hear of women being asked questions that wouldn’t be asked if they were a male employee or being discriminated against due to their gender. We may in the UK have a law in place to prevent these things from happening but if there is a culture of fear due to an economic downturn and managers who do not take such complaints seriously then a business will never truly know how many incidences are taking place as they are not being told about them. 

It is frightening to stand up against sexism and discrimination. I am not naive enough to believe that only women are sexually harassed. Just this week there has been an article in The Telegraph, where bar men are refusing to wear Kilts, as they are fed up with women lifting their kilts up. It’s not banter if it makes someone else feel uncomfortable and image the uproar if a woman complained that male customers were pulling their skirts up. As the manager of the establishment says if this was done to women the man would be arrested for assault, women are rarely arrested for doing the same thing. Levelling the playing field does not mean treating men the same way they may have treated women in the past. It means treating everyone with dignity and respect, remembering if you would find the treatment unacceptable it is not acceptable for you to do it to someone else. It also means if a woman commits the crime of sexual assault (which putting your hands on someone else’s genitalia is) the complaint is taken seriously. 

Today I have watched a phone in debate regarding the safety of the HPV which in Japan was stopped over safety fears. Cases of adverse reactions are starting to be featured in the National Press. I fear that these adverse reactions are not taken seriously due to it being young females who are the one’s suffering. The reactions have included developing PoTS, Chronic Regional Pain Complex along with many others. The Dr on the phone in programme dismissed out of hand the connection to the vaccination despite the girls becoming ill within weeks of receiving it. He also had no idea about PoTS claiming it was just a fast heart rate. It left me thinking if it was young males having adverse reactions would their suffering be dismissed in the same way?

p.s sorry if this post seems like a rambling mess, I am really struggling with brain fog / fatigue currently.


The Response to “Dear Norms”

My blog post Dear Norms (WordPress version here) produced a response on my blog, my The Myasthenia Kid page on Facebook, my own personal Facebook page and the comments section of both blog platforms that I could only dream about.

Although it was fantastic to receive such a response my heart was heavy reading other people’s experiences of being abused by “Norms” due to their disability. I have been very lucky to have suffered very few incidences of abuse. One of which I wrote about – Well if you’re that f**king disabled get off Facebook and take up knitting (WordPress version here). The abuse I received via social network when what had been a friendly discussion got out of control, upset me for days afterwards. I now know I had simply been trolled by someone who would not accept I had a different viewpoint from her. When she realised I couldn’t be bullied into changing my opinion she launched her vicious tirade culminating in “well if you are that f**king disabled get off Facebook and take up knitting”. 

It made my anxiety about leaving the house much worse. I do not suffer with agoraphobia but the open hostility with which the disabled are met on a daily basis, causes me anxiety if I need to leave the house for appointments etc. Due to my chronic conditions making me virtually housebound, leaving the house is a big deal. I know that it will have consequences for my health, normally a rapid deterioration. Add in the highly likely scenario of facing some sort of abuse and or discrimination, leaving the house can have self-esteem / confidence implications as well.

One response came from my sister Lucy ( who I am hoping will be a guest blogger in the next few weeks ). She also suffers from Ehlers Danlos Syndrome Hypermobility type and Dysautonomia along with other conditions she has picked up along the way. 

My sister has faced an enormous amount of hostility regarding her illness from day one. My sister was a medical conundrum back in the early 1990’s at age 14. It was just at the time that Yuppie Flu so helpfully named by the media was coming into the fore. What the papers failed to realise or accept was that the so-called Yuppie Flu was in fact a real medical illness Myalgic Encephalomyelitis or M.E for short. 

My sister was accused of faking her illness, having school phobia and medical staff tried to blame my parents for her condition implying they were both suffering from Munchausen Syndrome By Proxy. Eventually the diagnosis was settled on she had M.E or Chronic Fatigue Syndrome, which it is also unhelpfully known as. M.E and Chronic Fatigue Syndrome has about as much in common as football and Ice Hockey but I digress as usual. She was diagnosed with Ehlers Danlos Syndrome and Dysautonomia shortly after I received my diagnosis in 2011.

My sister was so ill as a child (and still is) that she needed a wheelchair both indoors and out. For two years she was confined to her bed and suffered from epileptic like seizures. These were explained away by the medical profession as psychogenic seizures, the implication being that she was putting them on. It is believed to be some form of somatoform disorder / conversion disorder. (Isn’t it funny how we have both been told that we have a psychogenic illness?) If that was the case she should have received an academy award. The medical profession may have decided she wasn’t worth their time or effort but our family GP who worked tirelessly to try to help her. She did find as a young person in a wheelchair she was accepted on the whole by society. How things have changed.

On reading my post “Dear Norms” she was compelled to comment and this is what she said;

When we took my son to the out of hours doctors recently the first thing the doctor said was, “Is that your wheelchair?” I am so f**king sick of people in the medical profession asking me that question, especially when I am not even the bloody patient.That’s like me asking an abled bodied person if that’s their legs or a transplant donors! I feel like saying, ” No. I’m just a huge fan of Little Britain and I carry car bumper stickers with me all the time so I can pimp up other folks wheelchairs.” It’s beyond stupid, yet I come under the category of “Disabled!!!” 

 I was so shocked by what Lucy said I couldn’t come up with the words to explain the outrage I felt. On talking with her she told me it happens at every medical appointment she attends with a new doctor, whether she is the patient or her son/husband is. I am left scratching my head as to what the medical relevance is to the question “is that your wheelchair?” Especially when Lucy’s five-year old son is the patient.

I regularly get the question “Can you walk?” when meeting doctors whilst using my wheelchair. I understand they want to gauge what my mobility levels are but it is a highly offensive question when again it’s not medically relevant, such as when my bladder was in spasm and I was in acute urinary retention. The explanation from doctors would be that they are trying to assess what help I will need whilst in their care. The question is so loaded that I feel that every time I answer it I am being forced to justify my using a wheelchair.

For clarification I use my wheelchair for many reasons. The first is for safety I can be incredibly unsteady on my feet causing me to fall on numerous occasions daily. I can lose my balance stood still that’s how bad my balance issues are. Another reason is that walking causes me intense pain due to the Ehlers Danlos syndrome, knees give way or dislocate, hips have a tendency to pop out more than I do and don’t get me started on the mess that is my spine. My wheelchair is also used because of my Dysautonomia, my blood pressure can drop like a stone and when that happens I tend to as well. It happens without warning. Also being upright causes my heart to beat rapidly (130bpm) and this is exhausting. Yet my explanations are met with a wry sarcastic smile, it’s as if my conditions are disbelieved. The wheelchair is obviously just for show, I am a lazy cow who doesn’t like to walk anywhere. I mean wheelchair access is just so great nothing stops me……apart from stairs, escalators, badly designed kerbs etc.

Another person commented that her ex partner had used the word “spaz”, “mong”, “retard” as a term of abuse whilst they were in a relationship. Her children are also disabled so the ex wasn’t just abusing her but her children also. This made her see red and she smacked him in the puss – her words not mine. I don’t condone violence but when backed into a corner it can be a natural reaction.

A long time friend of mine whose comments you can see on my WordPress blog described being spat at and told to get out of his wheelchair and get a job. As he says the people who did this to him, don’t know him from Adam and they fail to realise he has worked for 40 years. Unfortunately all people see is his mode of transport, a wheelchair. The chair has become in their eyes his identity and he is reduced to being a leech on society, sub-human. This man, this friend of mine who served his country, was injured in the line of duty. Is this really the way we are going to treat wounded ex-servicemen? It makes me so angry that intelligent human beings are being degraded in this way by people who consider themselves normal.

I don’t believe that you can be what most people consider “normal” to treat another human being in this way. I am so angry but I have used up my profanity allowance for the day that I can not find the words to express how I feel. 

It seems “Dear Norms” stirred up a lot of feelings for many people. It exposed me to some truly shocking and horrific personal stories. I just wish the people I was addressing in that post would realise the horrific damage they are doing by using those words and holding those attitudes. As a society we will never evolve if the disabled are seen as a drain on the country’s finances and not as human beings who have something to offer the world.

*  *   *

For those of you who may have missed this I have been nominated for a WEGO Health Activist Best in Show blogging award! This is a huge deal. I need your help though. Please could you follow this link which will take you to my nominee page. All you have to do is hit the purple endorse button and leave your name and email address. Both your name and email address will stay hidden, so I won’t know who you are or will anyone else. I need as many endorsements as possible to help my blog go through to the final stage.

This is a huge honour and the stuff of dreams for me. I have had this on my wish list for the last year or so and I am finding it very surreal that I have received a nomination. Thank you to everyone who has endorsed my blog so far You Are Awesome!

“well if you’re that f**king disabled get off facebook and take up knitting”.

The title of my post will become clear as you read it. I apologise in advance for the language but I feel it has to be repeated here. The abuse that was hurled at me on facebook needs to be set in context so I apologise profusely for the preamble.


I have recently experienced some firsts the likes of which as a disabled person I had never experienced until a Sunday in May (2014). I have lived in fear of this kind of abuse for quite sometime now. Of course I have heard the horror stories about various forms of abuse the disabled encounter either on line or out in public but so far in my life I had been pretty well sheltered from it.

As a disabled person (7 years of professional experience under my belt) I know that many of the disabled community live in a constant state of fear when out in public or on line. Some have developed social phobias or agoraphobia such is the state of fear for them when outside the relative safety of their home.


 Since the coalition government took power in 2010 our lives  (the disabled) have got worse. It seems to be open season on the disabled in this country and this is being fuelled by the right wing media. It seems the disabled are nothing more than the whipping boy for this complete shower of …….(you fill in the blank) that are currently in power. The disabled are seen as scroungers, who fake their illness and take your money (the taxpayer) because they are too bone idle to work. 


Let me point out I would love to work, to get out of the house and socialise like a normal human being, its just I am yet to find a profession where I can carry out my job role lying down (there is one but I’m loath to get into the sex trade!).

The fact that these “scrounging scum” may have actually paid into the system during their working lives seems neither here nor there as far as the right wing press / political parties are concerned and the vitriolic bile they spew. If you are taking money from the state you’re a scrounger. 


What the general public, who are being brainwashed by this message seem to forget is that the majority of people in this country would be classed as scroungers under this political mantra – Child Benefit, Child Tax Credits, Housing Benefit, Council Tax Benefit, DLA, PIP, ESA, the State Pension, these are all benefits being claimed by the same people who lap up the benefit fraudster stories in what passes for news these days. Yet all these people claiming these benefits seem to think their benefit claim doesn’t count. It drives me mad that they can not see the wood for the trees.


And may god help you if you happen to be an immigrant and claiming benefit. The fact you may have had to leave your country due to a threat of bodily violence against you for being gay, speaking out against a corrupt regime or just being a woman, doesn’t seem to matter to these people either.

I have been extremely lucky in the last seven years to not have my disability mocked or its extent disbelieved, on this particular Sunday in May that all changed. 


As usual I had asked a question of my friends on my personal facebook page not my The Myasthenia Kid page. The question was about some Morris Dancers that had performed in the town centre. I asked if it had made anyone else feel uncomfortable that they had performed with their faces blacked up. I will state here I am white, I wasn’t trying to be all politically correct and Guardianista. I was asking a genuine question and I wanted to see how my friends felt about it. The discussion was a grown up adult debate that involved me researching on line during it to see what was the reason behind the Morris dancers being blacked up.

The question had been posted on late Saturday night, around 10pm and all involved had been very calm and everyone was respecting each others opinions. My view was in the minority which it occasionally is. Our town isn’t very ethnically diverse so it was interesting to see if the answers corresponded to that. I imagine if I lived elsewhere in the country the answers would have been different. It was interesting and enjoyable, I love a good debate. I don’t post these questions to be controversial and the people that are my friends know that I will ensure everyone remains polite and calm whilst discussing a subject.


I have posted numerous questions before to be debated however I will admit this probably was the edgiest yet. I have always tried to stay away from “controversial” issues when I ask a question, sticking to softer subjects like the length of school holidays or school cookery lessons etc.

Sunday morning was a different kettle of fish, a person that I am friends with for professional reasons (as in I have hired her on one occasion to do some work for me) decided to wade in both guns blazing. Her attitude was aggressive and she was determined to bully me into submission because my opinion differed from hers. She rattled off numerous posts, to which it became crystal clear she had neglected to read any of the comments contained within the debate. I kept pointing out to her what she was saying was factually incorrect and if she had read what had gone on the previous night she would realise what an arse she was making of herself. Obviously in my replies I wrapped it up a bit and wasn’t quite so blunt. However once this keyboard warrior was set in motion there was no stopping her and she became more and more abusive and racist.


Anyone who knows me personally outside cyberspace, knows I will not apologise for feeling a certain way or holding a certain opinion. I asked her politely to stop being so aggressive and to stop reducing what had been a good debate into a playground slanging match but she continued. When it became clear to her that I wouldn’t back down she posted 

   “well if you’re that fucking disabled get off facebook and take up knitting”.

I was so stunned by her comment initially I didn’t know what to do. No one in the last 7 years has ever said anything so derogatory about my disability. I was in the midst of getting ready to out with my parents when she wrote that comment. I don’t know what shocked me more the comment or the fact she is the mother of a disabled child or the fact that her child has mixed heritage.


When discussing it later with some of my “friends” they didn’t think the comment was that bad and were confused by my reaction to it. I then asked them if it had been a racial slur would it still have been OK? The answer was a resounding no. So then I asked is it acceptable to make fun of disabled people or call them names like spastic, mongol etc? Again the answer was no. I then asked “do you now see why this was unacceptable to me?” I got a yes but I shouldn’t have had to jump through hoops to get them to understand. 


If someone says something like “well if you’re that f**king disabled get off facebook and take up knitting” firstly it makes me feel that she is questioning the level of my disability and secondly because I am disabled I am not “allowed” to be on facebook because thats for “normal” people. Which then in turn leads to the old fashioned belief that if you are physically impaired in any way you are also mentally impaired. This kind of thinking left a whole generation of bright physically impaired young people languishing in special schools which believed they would never progress beyond basket weaving. 


Thats why that sentence was so offensive to me and it should be to anyone who is disabled. I have a voice and I will use it. I will not be bullied or shamed into leaving something or somewhere because I don’t fit into this trolls version of a “normal” person.


I like to credit my friends with some intelligence, their political views may differ wildly from my own but life is made up of so many different beliefs it would be ridiculous not to have friends that thought in a different way from you. What makes me sad is that they have bought into the propaganda being spewed out by this government. Where it is becoming socially acceptable to abuse disabled people. The police in this county have reported for the first time a rise in hate crime against the disabled. We have reached a tipping point and nobody but those affected by it seem to have noticed.

I know many of you have faced far worse abuse but this was the first time it had happened to me. Looking at it now I can see yes it was abusive but on the scale of things that have been said to others its pretty insignificant. At the time it didn’t feel insignificant, it wounded me deeply, that someone that I “knew” could say those things to me and harboured those deep seated feelings against the disabled.

Deeply upsetting as her ignorant comment was I decided it wasn’t going to ruin my day out. I felt at the time (and I still feel) that the best course of action was to delete the Troll and her comments. I have heard from other writer friends that Trolls are best dealt with by ignoring them or neutralising them. I couldn’t leave my facebook page open all day for her to post her hateful messages that were not just against the disabled but were racist as well, when I would not be able to respond to them for hours.

So leaving the upset at home, I ventured out to a local supermarket, my first trip out of the house since before Christmas if you exclude hospital / doctor appointments. I was very nervous whilst I was out of the house as where I live is a small town and it was possible that the Troll could be shopping there as well. Thankfully there was no sign of her.

Whilst at the till, my mother had parked me up whilst she unloaded the trolley. I was sat there minding my own business, when I saw a woman making a beeline for me. I had my sunglasses on so I had a really good look at her as she approached me in case she was someone I really should recognise. She came closer and closer towards me and without a word put her hand on my arm rest and leaned right over me to pick something off a shelf. I sat there in stunned silence, my presence had been completely ignored by this woman and I had been reduced to just a fixture or fitting. Had I not had the run in with the Troll that morning I would have grabbed her arm and told her “excuse me!” however as I was feeling so vulnerable I didn’t.

I couldn’t believe that this had happened to me that the simple act of me being in a wheelchair had reduced me to the position of non human. I thought afterwards maybe this woman was equally as rude to the able bodied people around her. I will never know but to be reduced to nothing more than an extension of a shelf in the supermarket knocked the wind out of my sails. Especially when I was looking so gorgeous, having made a real effort to be glamorous for my trip out of the house. ( sarcasm alert – if you missed it!).

My sister has told me many stories of people climbing over her to get into lifts / toilets before her. How in pubs she has been called a “spastic” or worse. Its never happened to me, I’ve been very lucky. My exposure to the outside world is limited, a lot of my life is lead in cyberspace. I thought I had surrounded myself with “nice”, decent people, who accepted me for who I am. I was wrong and that hurts too. Having met the Troll twice she seemed nice enough. However you never really know what’s lurking underneath with some people until you get into an argument with them and then all their subconscious thoughts come flooding out.



I guess under this government and IDS its just going to get worse and I better get my big girl pants on ready to do battle. I certainly won’t be taking up knitting!