Welcome to our discussion group for invisible impairments

Sam_Alumni

Invisible impairments are disabilities or chronic illnesses that are not immediately apparent, they can be particularly challenging as sometimes society's idea of disability is a wheelchair user.

As a blogger, I started a campaign called More Than Meets The Eye to raise awareness of invisible impairments, I spoke to thousands of people who have faced  judgement because of their own invisible disability. People with cancer, prosthetic limbs, autism, Tourette’s, brain disorders, bladder issues, partners with dementia, IBD, so many illnesses and conditions, some of which I had never heard of!

But they were all saying the same thing. That there is more to them than meets the eye. Their disabilities may not be visible at a glance but they are so real and it makes their lives difficult at times.

This discussion group is a place to share your experiences of invisible impairments, to get and to give support to others in a similar situation.

If you'd like to share your experiences or seek support, simply click the 'new discussion' button at the top-right of the screen or read through other people's experiences and offer any support you can.

bendigedig

@Sam_Scope

Before I met my wife I had no Idea what Insulin Dependant Type 1 Diabetics go through.  It is not easy being an I.D. Diabetic

Im not sure about Type 2 Diabetics but Im fairly certain Type 1 is regarded as a disability, from an employment perspective at least?

I have an Aspergers diagnosis and so does my son.  im not sure how invisible we are.   I have to say very honestly and without any biass that my son is a very clever boy... We are very proud of him.  Often inexperienced Teachers make the mistake of thinking because he is accademically very able that he has no needs to be concerned about.  If however he has a bad day because of his comparratively immature state of emotional development or he is triggered into a meltdown or crisis situation....... Then they simply can not undrstand what is "wrong"!  Everything is his fault apparently, or if not his then it is our fault?  Hmmmm.  The last time I completed a Post Graduate Module in SEN, I thought that was the wrong sort of conclusion to arrive at when dealing with complex needs?

What is it that some very poor schools dont get about Aspergers and dissability in general?

I suppose between myself, my wife and our son, our household has a few hideen disabilities.  Its a shame that these aspects of what are ourselves seem to present so much difficulty for people because of thier own personal and profesional ignorance.

We don't expect any special dispensation or privalidge due to our conditions, just a fair crack of the whip.  A level playing field.  Within reason.

Interestingly,  regarding disability and employment.  I once applied for a possition in a National Autistic Society (NAS) School.   I am a teacher/lecturer but it wasnt a teaching position it was a learning support role.  The NAS supposedly has a policy of interviewing all applicants witha disability.  I made a reasonable attempt at the application and seeing as I had been a teacher I thought that I would standa very good chance of an interview (irrespective of my dissability status)

I clearly indicated that I had an ASD diagnosis.  Seemingly this was irrelevant to them.  I suppose in a way this is a good thing.  No special treatment for those with ASD

No such interview was forthcoming.    I just got the obligatory two line knockback.  Some time later I brought this up with an employee from NAS, she thought it was disgusting.  After hearing this I brought the matter up on the NAS advice line....... The lady didnt want to talk about it and put the phone down on me?!

Since then I havent bothered with the NAS.  Perhaps my disability is so invisible that the supposed National organisation for my "disability" and that of my sons couldnt even manage to ensure they followed thier own code of practice for interviewing disabled applicants?  Shocking, but strangely familiar poor practice, that seems to suround us these days.

I think for various reasons its important to not keep your disability invisible, although this is of course a very personal thing.  But we have rights as people.... those rights are there for everybodies bennefit.  Not everybody is born disabled.  Not all of us apear disabled, indeed disabilities are often caused when people with conditions are not afforded an environment to thrive in.  What I mean is society "disables" us from achieving our potential.

its important that we stick up for ourselves and be aware of our rights whether our disabilities are apparent or not.  Not just for ourselves but for everybody.

wildlife

Hi, I had my gall bladder removed aged 22. At the same time and all throughout my 20's I was in and out of hospital with Pelvic Inflammatory disease which resulted in abcesses and more operations. By my early 50's I needed a hysterectomy and foolishly (with hindsight) allowed a Gynaecologist to do keyhole surgery to divide adhesions round my liver at the same time. This has left me with damage in the small intestines and my insides bounce around out of my control. I'm 66 now, never feel hungry and can only eat small amounts and as the day goes on it hurts more & more. Further surgery is out of the question. Try telling this to an ATOS assessor. I have lots of other things wrong with me that I can explain but this is the worst. From the outside no-one can see or even imagine what is going on inside. Thank-you for the subject of this discussion. A really good idea....

bendigedig

@wildlife
It sounds like what you are going through is awful.
The Atos thing has to change.  I've heard so, so many bad things about them and the set up that allows this to happen.

wildlife

Hi bendigidig, Yes it is and you're right things do need to change. Invisible impairments are difficult especially when claiming benefit as the assessors, at least my assessor, didn't appear to have much medical knowledge from the questions she asked and comments on her report. Even a good assessor is only looking for the effects of common disabilities when recording how every day life is handled. I have reached the stage where multiple health conditions affect each other but the benefit so called experts and the NHS treat everything separately. E.g I have pain in my right foot but they don't know what's causing it. I have to have an MRI scan but in the meantime was given a boot to wear with tight straps up to the knee. I also have peripheral neuropathy, muscle weakness and tenderness so had to decide what was best for me and took it off in the car. Good job cause further down the road we had a puncture and I had to stand on the pavement while the tyre was changed. Getting back to the subject of this post, there I was looking perfectly normal but inside the body was in pain and the mind was crying out for somewhere to sit. There have been so many times in my life when I've suffered in silence knowing that I would be seen as making a fuss about nothing if I said anything because I didn't have a visible disability.  .   

iza

Hi All,
 I do agree that if you are suffering an invisible medical condition is hard for  others understand the invisible disability. All over  The World disable person is the person who is wheelchair user or had mental disadvantage. 
Since  the time I suffer Trigeminal Facial Neurophatic Pains I do consider  personally myself disable. I am in between two worlds: I  am no longer normal (healthy who can do whatever wants to do and wherever) and I am not counted as physically or mentally disable as well. Where I do belong than ???????????
I am not recognised as disable by organisations, government  and so on.  And I definitely cannot do what most of people at my age do. 
So I am in between : the normal world and the disable one. (Think ?! how unique I am than  )
When, I am saying to my child that I feel disable and  I see myself this way, my son says "mummy you do not have wheelchair". Ups indeed I do not have one. I think it is time to start educate kids at school what disability is, what types of disability can exist and  how difficult it is to adjust the life and yourself to new situation once you started to suffer from medical condition. 

Iza 

Harri

I had Ehlers Danlos, fibromyalgia, cervical spondylosis and arthritis, now I had grown up with a lot of these things and managed the equivalent of two and a half full time jobs. Then I had a silly accident and added Complex Regional Pain Syndrome into the mix which has completely floored me. I look no different (except I often need crutches now) but the pain and tiredness (probably due to meds) are so exhausting to say nothing of agony. I still get challenged in a disabled bay. I could forego make up and dressing as well as I can so that I look ‘deserving’ but I will not! Maybe I should have the ‘labels’ tattooed on my forehead!!!

My granddaughter has inherited the hyper mobility and providing she ‘wriggles’ and stretches regularly all is well. She has just sat her 11plus, and was not given these wriggle sessions - she failed by less than 2% (6 marks out of over 300) - the head teacher has admitted she knew but forgot on the day! My granddaughter plays sport to stay fit and strong, and looks absolutely fine but nobody sees the pain of sitting still and clutching a pencil for an hour or more. This is when hidden disability could drastically reduce her earning potential in the future, but hey, ‘she looked OK’!!! Well done KCC.

Sam_Alumni

Thanks for sharing @Harri

Harri

Thanks! I needed to get that rant out!!

DinoBoo

Hi all i have two invisible illness,s one being Fibromyalgia and Chronic Fatigue Syndrome also known M.E plus depression i had never heard from Fibromyalgia when they diagnosed me nor did they tell me that M,E is linked to Fibromyalgia so a year later i was diagnosed with Chronic Fatigue Syndrome /M,E i had heard of M,E but never Chronic Fatigue Syndrome but they informed that it had the Chronic Fatigue Syndrome  was the new word for M,E confusing or what lol when i told people i had Fibromyalgia many said i was making it up just to get more benefits even on my flare ups they said i was putting it all on my reply was why would i want to be in pain 24hrs when i was fit and healthy before i use to ride a bike go on long walks do everything know thats all gone even having a shower wipes me out for the day even most of the my gp doctors i've had was dubious but some took the time to find out what Fibromyalgia which helped a bit people just dont think to ask me why im in a wheelchair or on a mobility scooter instead of making nasty comments or just stare and point at me in public sorry rant over lol  
     

whistles

My impairment is so invisible the assessor said I didn't have it. 
Not sure how to prove otherwise the next time round. I do need prompting, they say no you don't. 

Circe

Hello all, I have spinal curvature (which I  was only informed about during an off hand chat with my Dr, my old consultant hadn't told me or the several Dr's I'd seen before.) I also have spinal stenosis /chronic pain caused by the said curvature. Thus, both invisible conditions  both alter the way I run my life now and for me  adjusting to the  fact that I can't do everything I want to, if I try it never ends well pain wise. I am still trying to accept that yes I am disabled. I am un-able to do things therefore I am in fact disabled .I was reading some very interesting and heartfelt discussions on here and that's been a great source of comfort and knowledge that your not the only one. I do feel like I'm not being taken seriously by society ,especially at work where I am still battling issues (trying to change jobs but I'm stuck where I am so it seems until an employer elsewhere snaps me up!). So I'd say to anyone who is as new as me to disability and this forum ,just dive in. It helps sharing and swapping knowledge with fellow decrepit folk lol. 

dolfrog

I have Auditory Processing Disorder (APD) which is a listening disability, or the brain having problems processing waht the ears hear. There are various types of APD:- problems processing target sounds when there are low levels of backgrouns noise, the temporla form having problems processing the gaps between sounds which can include the gaps between words in rapid speech and is the maninunderlying cognivie cause of developmental dyslexia, problems identifying the location of a sound source, and problems processing more what one ear hears compared to processing waht the other ear hears.

I have the  temporal form of APD, which is  the underlying cognitive cause ofd my dyslexia symptom. I have problems following verbal conversations and following multiple verbal instructions. I can forget what someone has said immediately after a conversation has finished. I have  word recall problems when talking to others, especially technical terms, so I have to find alternative ways of trying to explain topics.

since I was diagnosed back in 2003, I have had to try and educatethe various professionals which the Medical Research Council say should be part of a multi discipke support team for those who have APD - Audiologists, speech and language pathologists, and psychologists. To do this I have had to create multiple research paper collections and compilations to try and help these UK professionals overcome thei current ignorance. 

Sammiiiii

Hey Sam_Alumni, I am glad that there are people like you in this world. I suffer with dyspraxia all my life i have been judged and made to feel that i am the worse person in the world. My job haven't really asked me about it and i feel that the more that i try to control it the worst it gets. People Assume i am weird and feel unsafe around me and it takes it toll on me as i have been told to act 'normal' at work  by upper management 

Alex_Alumni

Hi @Sammiiiii and thanks for reaching out on this thread, I'm afraid Sam_Alumni hasn't been active since 2019, so she may not be able to reply, but I'm sorry to hear about the way you've been made to feel. 

You might like to talk to someone about what you've experienced, especially if you feel like you're being unfairly discriminated or not offered the support you need at work. 

Scope has some guidance on managing attitudes to disability at work, and what to do if you face discrimination. 

You'd also be welcome to contact our friendly team at the Scope Helpline if you'd like to talk things through with someone as well.

I hope this helps, and let us know if you need a hand, we're here to support you

Alex

Sammiiiii

thank you @Alex_Scope i think that me being put in touch with Scope is  good idea 

Ed1969

Hi there,I'm Ed,relatively new to the group. Diagnosed with chronic pancreatis, due to low pancreatic enzymes, and same time ,diverticulitis,last May. I have had funny looks when coming out of disabled toilets,when no male toilets available. I have had a  occi health report,allowing me to carry on working..however,I have been counted and timed when using the toilet,prior to been diagnosed. I have struggled, both mentally and physically,however since I have started taking crown medication, I am in a better place.

Circe

I have no experience of your conditions but your employer sounds unsympathetic. Have things changed?