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Hidden disabilities: Pain beneath the surface

Admin Kat
Admin Kat

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Hidden disabilities: Pain beneath the surface

Post by Kitkat on 5th July 2017, 12:01

From the BBC Disability News site:

Georgia took part in a campaign as a child to show life is not restricted by diabetes

Imagine having to inject yourself thousands of times over the course of your lifetime, but never talking about it to anyone.

Many people live with hidden disabilities - conditions which don't have physical signs but are painful, exhausting and isolating. Sympathy and understanding from others can often be in short supply.

Simon Magnus, Georgia Macqueen Black, Erika North and Natasha Lipman explain what it's like to have a hidden disability, which some of your friends and family may silently be dealing with.

Simon Magnus is dyslexic.
He is the artistic director of arts charity Root Experience.

It's taken me some time to properly "own" my dyslexia. It has been a source of shame and embarrassment for most of my life. In trying to conceal my condition, I have let people think I am lazy and disorganised. The truth is, I really can't get my ideas onto paper, and my fear and anxiety around "being unable to write" has stopped me from achieving things I wanted.

I had a meeting recently and it was going well, then they asked me to do a written evaluation. It made my heart sink. I had to tell them that I couldn't do it. Eyebrows were raised, but I told them about my dyslexia and owned it. The outcome might not have been what I wanted, but it was a huge step for me.

Provision for dyslexic people in everyday life is not available across the board yet, and nor is provision for those of us with anxiety or other hidden disabilities, but I hope they thought about it afterwards and perhaps, in the future, they might consider how they could work with someone like me.
Invisible conditions are just different to how we think the world operates, but the more of us that 'come out' the more we realise how many people live with these experiences and that a simple change in a process can mean all the difference.

Georgia Macqueen Black has Type 1 Diabetes and was diagnosed at the age of 11.
She works for Shape Arts on the National Disability Arts Collection and Archive.

Type 1 Diabetes cannot be seen until I take out my insulin pen and inject myself, but the mechanical parts - blood tests and injections - are only the surface layers of what I have to manage.

Someone may see me inject, but there's an isolating exhaustion I take with me afterwards. There will always be another injection and it can generate a disconnection between myself and other people.

Every day I gather the willpower to be a "good" diabetic, but when I follow the rules and still have high blood sugar I feel alone. It makes me feel foggy with a limited ability to concentrate. And the side-effects of too much or too little sugar in your blood can lead to you turning in on yourself.

The biggest challenge is accepting the monotony of managing diabetes. There are days when I'm tired of having a weaker immune system - a lesser know side-effect of diabetes - or when I find lumps under my skin from injections, but then I have to put those feelings to one side and carry on.

Some people might not think diabetes deserves the label "disability", but if unmanaged it affects my ability to carry out tasks and I have to think how exercise, stress or dehydration will impact my blood sugar levels.
I often worry about how life will be when I'm older. This feeling of uncertainty hangs over me from time to time, and can make me feel lonely and a bit lost.

But I know there's a silent solidarity out there. Someone with an impairment could be having a day where everything has become derailed and they feel ill, but I bet you they won't show it. It's that resilience that I really connect to.

Georgia, Simon and Natasha's top tips on hidden disabilities

  • There's so much mental labour involved so if I seem distracted it's probably because of that
  • Believe me when I ask for help. Just because I don't look like I need assistance, doesn't mean I'm OK
  • Respect priority seats and wheelchair spaces on public transport
  • Listen to access requirements with an open mind - often small changes make a huge difference
  • Ask for what you need - in asking for help you don't have to pretend to be someone else

Erika North presents a show on Radio Kent and has multiple sclerosis (click HERE for video)

Natasha Lipman has Ehlers-Danlos Syndrome.
It's a connective tissue disorder that causes dislocations, chronic pain and fatigue.
She is a blogger and podcaster.

If you've got an invisible disability, you've got to look convincingly stricken because people often don't believe it's there.

If you were to meet me on the street, you'd probably think I was a pretty average 20-something. You'd certainly take for granted that I can stand, walk up the stairs, work and move without pain. But I can't.

I suffer from severe chronic pain, my joints pop out at will and I'm often too fatigued to get out of bed. If someone knocks into me in the wrong way I could end up in hospital or wiped out from high pain levels for weeks. Standing makes me dizzy and worsens my fatigue, and being squished against other people sends me into a panic.

I'm legally entitled to the same support that other disabled people get, yet I often find myself ignored or told those resources "aren't for you".

One week, five people refused to let me sit down on the Tube - three of whom told me a healthy young girl like me should give up her seat. The only time people ever gave up their seat was when I passed out on the floor - a pretty visible sign something was wrong.

I often feel humiliated when I have to beg for help and I've been lectured more times than I can count for using disabled toilets. I'm told over and over that I'm "not disabled enough". Over the years I've become too scared to ask for help.

Things change when I show "evidence" of my disabilities. I use an Access Card, which states any difficulties I
might face and the adjustments that could be made, and I purchased a Radar Key, which unlocks accessible toilets across the country without me having to ask permission.

Despite proof, some people only take me seriously when they see me struggling. I realise most people don't understand what they can't see, but my disabilities shouldn't need to be displayed to be believed.

Produced by Beth Rose

For more Disability News, follow BBC Ouch on Twitter and Facebook, and subscribe to the weekly podcast.
Just can't stay away
Just can't stay away

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Re: Hidden disabilities: Pain beneath the surface

Post by OreoCat85 on 1st September 2017, 12:47

I can relate with having pain beneath the surface, I have an incurable and invisible illness!  And some days I have good days and some days I have bad days!  So if anyone would like to chat then feel free x

"Thanking you all for allowing me to be apart of this wonderful group!"

Admin Kat
Admin Kat

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Re: Hidden disabilities: Pain beneath the surface

Post by Kitkat on 1st September 2017, 15:02

EndoWarriror wrote:I can relate with having pain beneath the surface, I have an incurable and invisible illness!  And some days I have good days and some days I have bad days!  So if anyone would like to chat then feel free x

Tell me about it!  crybaby   I know all about the good days and bad days ...  
Not just one health issue, I have multiple issues which are constantly changing and being added to but, fiercely independent, I suffered for quite a long time with some of these issues much more than I needed to.  Just as an example, like Natasha Lipman above, if I encountered an obstacle in front of me and had to make a certain turn or e.g. a child bumped into me on the street or in a supermarket the pain can jolt through my body and lock me in that position, being unable to move even a finger to reach for my phone, or be able to take another step for maybe 10 to 20 mins until the pain unlocks and subsides. Just one reason why I can't use public transport of any kind (steps, for instance, are a no-no) but luckily I have my own little car with all my necessary help gadgets around and which is adjusted to all the needs that are just right for my situation.  I am also a Blue Badge holder which helps enormously.

When the chronic degenerative disc thing became an issue I started off just use a walking stick for support, which alerted folk around me that there may be a problem - but that didn't stop the incidents when someone might brush ever so lightly against me, but in just the wrong place, or making a wrong move which set off the jarring, locking pains.  So now, I use a 4-wheeled walker with its own seat (at just the right height for me to use comfortably - most standard seats are too low for me) and removable basket/carrying place.  This is by far the best measure I could have opted for, in terms of independence and practicality.  I can quite safely and independently move around now wherever I want to go - in my own marked-out space, with sturdy support and places to carry all my needs (fold-up stick, reacher, shopping) and also means I have my own portable seat which I can just park anywhere when needed.  The whole thing folds up and fits into the car to take with me wherever I go.  Even helps with things like hanging out washing on the line and all sorts of stuff at home.  This trusty little gadget (which I call Molly) has changed my whole way of coping with my various ailments and most importantly, it's given me back my independence.  It's just so much a part of my everyday life now that I don't even have to think about it - or the problems that it looks after.  People don't bump into me now. I have my protective armour around me. Mums & dads will instinctively keep their kids from running into me.  I find that people, young and old, are extremely kind and helpful - even offering to let me go before them in supermarket checkout queues etc ....
If I didn't have Molly with me, I would still have the exact same problems, but I wouldn't have the same ability to cope with them and would just have to suffer in my own stupid independent silence.
Also, I now don't have anything near as many 'bad days' as I used to have before Molly came along.

How does your "invisible illness" affect you on a daily basis, EndoWarriror?
Admin Kat
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Re: Hidden disabilities: Pain beneath the surface

Post by Kitkat on 3rd October 2017, 19:53

I had originally posted this in Endowarriror's 'My Endometriosis Story' in her Blog:

I came in here to have a read back through, as currently some of the terms used in connection with Endometriosis have begun to rear their ugly heads again in my own case (e.g. hyperplasia, atopyia, endometrial thickness, Pipelle, biopsy, ovarian cyst, Mirena treatment, and ... - the dreaded .. hysteroscopy ....  Yes!  I have shortly to go through yet another one of what has turned out to be in the past (twice - so far!)  my worst possible nightmare and something that I have sworn I will never, ever go through again - but seems I have no choice in the matter.  Just waiting now for the date for this hysteroscopy procedure to be happening - with what makes it 50 hundred times worse .... as was the case with the most recent one - NO ANAESTHETIC!!  It has been agreed that because of my various mobility problems they will perform it in main theatre, rather than just outpatients, so that anaesthetists can be standing by - in case needed!

Consultant reports that he he is reluctant to employ Mirena treatment to aid regression of the condition "because there is inconclusive evidence over whether or not this affects breast cancer recurrence".  Having had breast cancer twice in the past, he doesn't want to take the risk ....

So, for the moment, I am plonk back in The Waiting Game ................

Following on from that post, I am still in The Waiting Game - but the most dreaded part is at least now over with.

I had the nightmare Hysteroscopy procedure yesterday at hospital.  I arrived at 10:00am for the 11:00am appointment - and left the hospital at 7:30pm when the Day Ward closed.  The procedure itself took about 15 mins and apparently went well - most people usually go home after that, but I was brought back to the ward writhing in agonising, searing vice-like pains, the very same post-op aftermath as with the 2 previous similar procedures.  The Ward Nurse commented afterwards that it's the first time any of her patients had come back from theatre suffering in such a way after any such a procedure.  (I remember them saying to me in the Theatre while transferring me back onto the trolley, that I would be administered strong painkillers when I get back to the Ward.  (I knew it was a long journey back to the Ward, in fact I had commented on the way there that we seemed to have travelled about 3 miles getting there).  I was unable to speak at this stage, apart from uttering short few-word sentences in the momentary seconds-long periods in between the regular waves of agony, and through my pain while curled up in a fetal position, I could hear quite a bit of shouting when we eventually arrived back in the ward, with the Italian ward nurse shouting at someone about why I could not have been given any pain-killers before leaving theatre.
In the midst of all this, I remember seeing the Surgeon's face in front of mine, telling me that the procedure itself had gone well, but it seems I may have had some sort of reaction to the fluid
ETA: (I have since checked this out & found that they may use 'gas (carbon dioxide)' Shocked or 'a fluid'.  I also found this: )
that they pump into the womb to fill it out to full stretch to make it easier for them to see all and do whatever it is they are doing. Seems this may be causing some sort of pressure somewhere, and that causes the pain. (In my case they were attempting an endometrial biopsy tissue sample to be sent for histopathology (checking for any signs of cancer, which has to be ruled out because of my breast cancer history).  I should have the results of that in about 2 weeks' time, when I'll be seeing the Consultant again. 
All in all, worst bit over - for now at least.  I had the best sleep last night that I've had in a long time.
Admin Kat
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Re: Hidden disabilities: Pain beneath the surface

Post by Kitkat on 4th October 2017, 10:47

From that link given above: )

Anyone had a painful outpatient hysteroscopy?

I was diagnosed with womb cancer two years ago after the most horrendous procedure I have ever had to endure. A hysteroscopy is a procedure where a camera is passed through the cervix into the womb so the consultant can have a look at what is going on. Biopsies can be taken if necessary.

More and more of these hysteroscopies are being done in outpatients without any pain relief or anaesthesia. I found it very distressing but, as the procedure is touted as being painless or causing mild discomfort, I thought I was the only one to find it like this. How wrong was I!!!!!!

... The amount of people who have replied to that question expressing the same descriptive words and phrases that I have done - (e.g. "horrendous", "nightmare", "worst experience I have ever had to endure in my whole life - even though extremely high pain threshold", etc ), is quite astonishing, and yet a relief in some ways for me realising that my experience was not at all as rare as we are led to believe in the 'helpful' bumph that is provided to prospective patients beforehand.

Of particular notable and ponderable interest for further investigation is the following comment included within one of those responses in that link:
" ... knowing as I now do that the whole question of GA (general anaesthetic) is one revolving around government incentives and cash saving."  
Admin Kat
Admin Kat

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Re: Hidden disabilities: Pain beneath the surface

Post by Kitkat on 21st November 2017, 21:20

So as not to leave [my part involvement in] this topic hanging in mid-air:

Following further investigation, including MRI, followed by full Hysterectomy op, the official term for my issue turned out to be
complex atypical endometrial hyperplasia.

Had the op on 8th November, and recent meeting with the Consultant has just confirmed:
as per:
All is well.  No need for Macmillan nurse, and no follow-up needed.
The official term was complex atypical endometrial hyperplasia.  All the baddies were got rid of  stickit , and 'most importantly', were caught and dealt with in good time.  There is no maverick travelling anywhere outside of the mapped route and everything is now healing up just as it should.
I got my discharge papers today (20th November). YESSSSS wine banana

    Current date/time is 17th July 2018, 00:49