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'Invisible disability' - not exactly what it says on the tin

invisible_iinvisible_i Posts: 1Member Listener
edited November 2017 in Guest blogs

Katy from Invisible i is a youtube creator who has Asperger's Syndrome and Fibromyalgia. She posts videos about her lifestyle and experiences whilst learning to live with diversities and disabilities. Today she talks to us about invisible disabilities.

I've had Fibromyalgia for around 12 years (diagnosed nearly 3 years ago). Fibromyalgia is a chronic pain condition that affects my life in different ways every day. Despite this, Fibromyalgia is one of a group of 'invisible disabilities' otherwise known as 'that group of disabilities that confuses people'. 

I am still baffled as to why people don't understand or accept invisible disability. I can only assume that when I tell people I'm disabled they're looking for wheelchairs and bruises and bandages (oh my!).  No wonder people assume that my disability is invisible! You wouldn't go to the desert to look for fish so why look for seemingly 'invisible' disability in ways which are plainly visible. But I guess we live in a society where seeing is believing so I want to help others to see my invisible disability. I'm sorry to say, but it doesn't involve wicked sorcery or black magic. It's actually rather simple. Yes, my symptoms may be invisible but my life isn't and it only takes observing one day to see the effect that my disability has.

black and white image of woman sat on bed holding the words invisible i

It starts with the obvious gap in the office and extra workload for my co-workers when I've called in sick. Again. Like everyone else, they can't see my Fibromyalgia but my absence is far from invisible to them.  The guilt of disappointing my boss is all too familiar and I could never handle this. Before I resigned, work not only had a constant battering on my physical health but took a toll on my mental health too - even if I hadn't stepped foot in the office.

I pull myself out of bed and hear every bone crack, creak and complain. My cloak of invisibility is of no use when people can hear me coming from a mile away! I give myself a telling off because I know I should've been doing my Physiotherapy exercises but it often feels so hopeless. But today I get up, I go downstairs and I motivate myself to stand in my living room and perform these exercises as I was taught. I start doing some gentle squats right in the only space in the room that's big enough and it just so happens to be right front of the window. 'At least I'll entertain the neighbours with this one' I think to myself.

I certainly don't feel invisible when I park up and place my blue badge on the dashboard of my car. I get looks from people as if I've forgotten to put clothes on! They are visibly horrified by the twenty-one year old taking up a disabled space and look me up and down for any sign of disability. A blue badge is clearly not enough of a noticeable cue that I'm allowed to park in a disabled spot. Perhaps showing them the prescription of tablets I am about to pick up would be a better explanation.

image of woman smiling and sat on a bench

I wish I was invisible when I'm sat in the kitchen watching my mum cook dinner for me. The impact of others caring for me is never too small to see. I sink into the world of social media as a method of escape. I see a selfie from my friends who have met up for drinks.  I should be in this photo but instead, I'm invisible. My invisible disability is not all of who I am so why is it making all of me invisible? I know I had texted them that I didn't mind them going without me but I did. I worry that eventually my friends will stop inviting me out because they know what the answer will be. Then I go to bed with nothing but the hope that I can get up and make breakfast for myself in the morning.

I think it's time for people to see invisible disability in a new light (or to simply see it at all!). An 'invisible disability' is a disability that is not immediately apparent and not one that isn't apparent at all.  Looking at me may not give you all the answers you need but perhaps if you were to look a little closer, you would see that my invisible disability is not so invisible after all.

Tell us your experience on invisible disability, have you struggled because people don't recognise your impairment.  You can also find Katy on facebook.

Katy Gough (invisible i) 

Youtube : www.youtube.com/invisiblei

Other Social Media 

Facebook : www.facebook.com/invisibleikaty
Twitter : www.twitter.com/invisible_i
Instagram : www.instagram/invisible_katy


Replies

  • TopkittenTopkitten Posts: 1,003Member Pioneering
    I suffer a spine aging at double the normal rate and collapsing disc by disc causing chronic pain from the waist down. I also, for the second time, am suffering a ruptured cervical disc causing further pain and problems with hands and arms. Due to the length I have suffered I also have neurological pain in one leg. All these are invisible as are the various MH conditions that have followed the condition and lack of real support.

    I get odd looks ALL the time. People say I look good for my age and, as my chronic pain is always triggered well after invoking it, find it odd that I can do things I'm not supposed to or said I can't sometimes. Because, unlike most conditions, mine doesn't have a name I cannot give a simple explanation without being completely misunderstood. Even when I do explain carefully they always assume that a spinal problem is a back problem and I often hear "Oh, I get that too". Sometimes I tell them they don't and that they have no idea how much pain I suffer but other times I simply cannot be bothered.  When there is a look of complete disbelief I throw my last barb. I tell them I suffer sciatica constantly and have the equivalent of 6 or 7 slipped disks. Then, of course, I get the comment or look about how can I possibly walk at all, laugh, joke and get about if that's the case.

    Basically 99% of people do not understand pain in the slightest except as something you take pills for sometimes to make it disappear. They have no concept of managing pain and conditions or how they can vary from one day to the next. A lot assume disability means the loss of a part of the body or something caused by an accident. That if you don't use a wheelchair it can't be too serious. That sitting is often no better than standing. There is also the problem that if you do use a wheelchair or scooter then people stare wondering why I need it as I look healthy. Also those that basically don't look down in case they see me and have to converse with someone who obviously isn't very bright or I would have taken the cure.

    Constantly trying to educate people is life sapping.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • samparrot123samparrot123 Posts: 50Member Courageous
    I know what your going through only to well ,I suffer from RA and curvature of the spine ,I recently went to Spain and had to spend three days in my wheelchair,the pain was unbearable but after three days it started to ease ,and I started to use my sticks again but I could feel people looking at me thinking he's put that on.maybe all disabled people should wear a sign saying what we suffer with that might stop the staring.
  • Barrylad1957Barrylad1957 Posts: 100Member Courageous
    @invisible_i
    Hello, I was diagnosed with fibromyalgia last year, but it was a long time being diagnosed, and I realise now that I've been a sufferer for quite some time; it appears that Ive spent the past few years thinking it was a combination of wear and tear/ageing/the results of a misspent youth, etc., and it was good to finally give the demon a name, and to get the correct type of pain relief from my gp. I dont know if you have experienced anything like this before, but after being diagnosed by two gp's at the practice, and referred to neurology and musculoskeletal, a third gp - who is, unfortunately, the one I most often see - said dismissively that fibro was "caused by depression"! Hmm... so, thats why none of the medications she had previously prescibed actually did any good, then...
    I have had the old 'but you look fine?' routine from a few people - (it feels really odd to say it on here, but one person who sympathised and knew precisely how it affected my day to day life, appeared to know a great deal about Fibro, and all the little gremlins that accompany the condition was the atos nurse who did my Work Capability Assessment, which was something I hadnt realistically expected) - and, the reaction from a few that Amitriptyline "Is for mental illness, isnt it?" - but the people closest to me have witnessed the rapid physical decline, and the cognitive deterioration that has taken place over such a short period, and, in the final analysis, it is their opinion that counts most, to me. Oddly enough, when my daughters were 'swotting up' on Fibromyalgia after my diagnosis, your excellent videos were one of the research tools they used, so thank you.
    I hope that you are as well and happy today as you can possibly be, and that you remain so x
  • Simon_P_ASimon_P_A Posts: 1Member Listener
    Totally agree with how you all are feeling. I'm 46 and on the outside look healthy and well for my age. I suffer from three prolapsed discs with root nerve fragment to my left leg. The pain is horrible and is something that I have had to cope with for nearly five years. When I go out with ny partner on my mobility scooter or when I park in a disabled bay, the looks that I get are like I had just murdered someone. It's all too easy to judge based on appearances. Life isn't easy living with a physical disability, but life living with a physical disability and the dreaded black dog is horrible.  It's a horrible vicious circle of chronic pain and depression, not being able to plan from one day to another, or trying to get through the day on two or three hours sleep. Oh what it would be like to be disability free.
  • Pippa_ScopePippa_Scope Posts: 5,856Member Disability Gamechanger
    Fab post @invisible_i, and hello from a 22 year old disabled person with invisible conditions (that as you say, aren't always so invisible if you take the time to look!). Hope today is as kind as possible to you! 
  • icecreamicecream Posts: 14Member Connected
    edited October 2017
    very well put young lady @invisible_i

  • MJDeanMJDean Posts: 40Member Courageous
    Great post and very eye-opening @invisible_i

    I have Aspergers too so can definitely relate to your experiences. 


  • ClydeBuiltClydeBuilt Posts: 41Member Connected
    I agree and support your feelings 100%

    I started off common garden arthritis, plus another dodgy one. But now Pleural Plaque and mental health issues combine to make life one whole new ball of wool.
    Chin up Lassie!
  • [Deleted User][Deleted User] Posts: 689 Listener
    edited November 2017
    The user and all related content has been deleted.
  • di1di1 Posts: 4Member Listener
    I was diagnosed with disassociation fugue in 2010.most of the time it doesn't effect me as such apart from always being in my mind but when I have an episode I need watching round the clock.its cost me my job and due to lack of knowledge and funding none of the benefits seam to know where I fit in which doesn't help with stress levels.im currently awaiting a medical to see if im able to keep my driving licence. I know what u mean by invisible illnesses they are really hard to live with as they are harder to prove to people like the saying seeing is believing.
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
  • PammiePammie Posts: 12Member Listener
    I’ve had a lot to do with various disability campaign groups since the replacement of DLA with PIP was first consulted on.  I came up against a lot of resistance to DLA/PIP from ‘able bodied’ ordinary members of the public who responded to our consultations.  

    Most of the opinions expressed, demonstrated plain ignorance and a shocking willingness to accept the ‘disabled people are all scroungers’ media smear that the coalition government ebarked upon.  They simply didn’t understand that living as a disabled person is expensive and that’s what these benefits were designed for. One person actually told me that if all he had to do was walk with a stick he would gladly do it if he could get ‘money for nothing”.  I calmly asked him if he would like to spend the rest of his life dealing with a slow degenerative and painful condition, have to ask for intimate and embarrassing help with almost every aspect of personal care, have to cope with incontinence and the massive gas and electricity costs involved in dealing with that particular aspect - not to mention the padding and bed protection stuff which costs a fortune and isn’t available on the NHS, and to have no prospect of recovery.  Add to this the prospect of ending up in a wheelchair at some point once I reach the point of no return.  To his credit he blushed profusely and apologised.  

    My point is this - I have a fairly severe and perfectly visible disability and I still attract this kind of vicious attitude from some people - I use a wheelchair outdoors and I have even been challenged getting out of my car in a disabled space, as I make my way around the car to the wheelchair hoist.   So I feel very, very sorry for anyone who has a hidden disability because not only do people not understand, they’re not very nice in a lot of instances either.  From a recent survey on PIP assessments it seems that DWP staff and assessors don’t understand the concept of a hidden disability either, and you are more likely to end up with a low award, or potentially no award at all until you can get to a tribunal staffed with proper medics who understand your condition.  As a society we should be ashamed of the way disabled people are treated in a lot of cases. 
  • NystagmiteNystagmite Posts: 609Member Pioneering
    I was pretty much told by the person who did my assessment, she couldn't see anything wrong, therefore, there can't be! Obviously, the medication which gives me nosebleeds and infections are just for fun and so are the many hospital appointments...
  • magpieisworkingmagpieisworking Posts: 3Member Listener
    I have a cornucopia of invisible disabilities hitting me at 28 and have been for a few years (all are inherited so they were expected ..but still!) It amazes me how many people “tut” if I take a seat at the bus stop so it’s not available for the “elderly who clearly need a seat” ..to be fair most days they can probably walk twice as much as I can ! I’ve also seen my mother be a victim of people being abusive as she pulls up in her mobility car into a disabled space ,puts her blue badge up and doesn’t come out of the car with a wheelchair or crutches . She’s been suffering with Psoratic Athritis , Colitis ,M.S And is also a cancer survivor ! But people don’t try to find that out ..I really do sympathise for those with the invisible disabilities ..Stay strong and Thankyou for writing this article , I hope it shows others that we aren’t alone and disabilities aren’t just wheelchairs and hospitals xxxxx
  • melaniethorleymelaniethorley Posts: 75Volunteer community adviser Pioneering
    Thank you for sharing your experience.  Statistically, in the UK, only 8% of disabilities are visible. I have had fibromyalgia for 31 years but look very healthy as I am quite round and fairly tanned. I do not look or act like a 'disabled person' but am very vocal about invisible disabilities. my team call them invisiBilities
  • Sprocket25Sprocket25 Posts: 2Member Listener
    I have epilepsy, mostly absence seizures. I have mental health problems and i experience a lot of pain from injuring myself when i looked after children. I get looks all the time... I have a disabled bus pass and some days I need to sit in those 'seats for elderly or less able'. The looks I get for having a bus pass or using those seats are so horrible. I also got a very low PIP award and the only section I scored on was to do with my ability to go out alone. I can't actually afford to pay anyone to accompany me with what little I get. I didn't get anything on my mental health or ability to cope in the house - my neurologist advised I cannot shower alone or cook in case I injure myself having a seizure. People really do annoy me when they look or stare and those that comment are the worst...
  • DawnTLDawnTL Posts: 4Member Listener
    Hi, your article was very interesting to read and very relatable. 
    It is possible to have a visible disability (I’m a full time wheelchair user) but also to have an invisible disability too.
    I have neuropathy and myopathy from the waist down which causes, at times, the most excruciating pain, muscle spasms and cramps that can last for several minutes for hours at a time. I also have arthritis, fibromyalgia and epilepsy with a weakened immune system for good measure.
    When people see me they often see someone who can’t walk and that’s it but my disability is so much more than that. So invisible disabilities can effect those of us in a wheelchair too!
  • foxukfoxuk Posts: 93Member Courageous
    edited November 2017
    Like others I have an unnamed impairment which causes problems. Unfortunately the common sense of the older Doctors has gone. I don't have the 'luck' of my father.........

    My father was disabled from birth and diagnosed with Fredreich's Attaxia he was a subject of research when he survived into his 50s and the conclusion was summed up in the statement of the Professor heading the research - 'We don't know what you have got, David, but you have definately got it. It's not Fredreich's but that is as close as we can get. We're going to continue calling it Fredreich's so you don't get problems with twerps in the future'.
    Dad died at 83, having been told, in his youth, that he'd be lucky to reach 40. The cause on his death certificate was........ Fredreich's Attaxia. 

    For me it's a lengthy listing of symptoms with the 'medical professional's' eyes glazing over and making innumerable interruptions, trying to move on, before I get half way through the list.

  • clare_1clare_1 Posts: 101Member Courageous
    What a great read.
    It always frustrates me wen people are so quick to judge a person on looks alone.
     I once got hurled abuse at because I wasn't walking fast enough over a zebra crossing. when me mum explained I can't help it, the man then said " yeah it sure looks like she disabled ".
    I suffer from functional neurological disorder, scheuermann's disease in lumbar thoracic spine, sciatica and social anxiety.
    Thank you for your story on the situation 

  • EhitEhit Posts: 18Member Connected
    Thank you for sharing your story. I too have fibromyalgia and know only too well those looks that obviously just don’t believe you. My latest was that of my PIP assessor! I’ve lost all my PIP because I was having a good day. 
  • NystagmiteNystagmite Posts: 609Member Pioneering
    Ehit said:
    Thank you for sharing your story. I too have fibromyalgia and know only too well those looks that obviously just don’t believe you. My latest was that of my PIP assessor! I’ve lost all my PIP because I was having a good day. 
    This happened to me too. It looks like when I have another dreaded assessment, the only way not to fail is to play up on things.

    I did once have a bus driver want to take my bus pass off me because according to him, I don't look disabled. The criteria for a bus pass is that you have to be refused a driving licence. (or other things) I meet that criteria for various reasons, including the medication I'm on. But how would anyone know anything about my medication unless I actually say something?

    I was once refused a bus pass on the basis that I can see too. I would love to know how anyone actually knows what I see.
  • mikehughescqmikehughescq Posts: 3,492Member - under moderation Disability Gamechanger

    We need to remind ourselves periodically that we don't "attract" the vicious comments. There just happen to be some fairly unpleasant and ignorant people out there and effectively everyone who is not them is their target.

    I have had a symbol cane since Februaryish this year and it felt like a huge leap. Family, and myself felt it would make me a target. An ECLO on a bus and a couple of other people persuaded it me it would be a protection. On balance the latter wins most of the time and the visibility has been a boon.

    For every idiot who thinks it's funny to wave in my face because they think I don't have the sight to see them or thinks they've been very bright because they queue jumped me assuming I wouldn't see them I simply remind myself that I have been asked whether I needed any help more times in the past nine months than I have in my entire life.

    For every person who looks bewildered, scornful or angry because I have a cane and yet I am reading on the bus there's someone who will offer to carry my tray in a crowded Costa or similar. Sometimes I'll accept the help and sometimes I won't. I'm sure that confuses them even more but that's life. Few of us have impairments or feelings associated with them that are consistent from day to day.

    Moving on from that point I would take (small) issue with one aspect of the original post. Yes, if you look and pay attention and give something the thought to put two and two together then invisible impairments become very obviously visible. However, the reality is that most people we interact with do not get the pleasure of a day with us. They don't get the opportunity to see the different things and conclude they add up to a rather different whole. It's as easy for us to misjudge them as they us. There is huge value in talking to people and explaining. It's hard at first but the more you do it the easier it gets.

    As regards PIP I would urge people to not lie about their impairments. Ultimately it damages your credibility and that will matter if you pursue to an appeal tribunal. The quality of HCP assessments and decision making is currently very poor. That's no reason to commit what is in effect fraud. get yourselves competent independent advice and representation and go from there.


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