Invisible Disability

[Lulu_Lollipop]

Hello again

Would love to hear how people cope with dealing life with a disability that affects them hugely, but finding other people lacking in understanding as your disability is invisible.

I returned to work, a job I loved and have been in for 34 for years, after 2 years off following major brain surgery for a large aneurysm. My return to work was out of desperation really as I wasn't well enough, but was going through horrible divorce (30 years married) and I was struggling financially. My phased in period was 5 weeks of sitting in a peaceful office reading and catching up. I felt good to be back at work and warmly welcomed by colleagues and customers.

Then after the 5 weeks I was expected to hit the floor running. Neuropsychologist provided a list of suggested support to help me manage my job and help me with my cognitive function issues. None of that was understood or carried out by my workplace/manager/colleagues. A break was supposed to be provided when fatigue hit me. That wasn't provided for months and when it was introduced it was 15 minutes when it suited them rather than when it was required by me. I also had to work longer to make up for any break. Pressure was piled on me - targets for sales etc in a financial institution when we aren't supposed to have targets, but... Support from colleagues turned to resentment. They saw me looking fine (I do my best!) and back after 2 years off so I must be fit and well. Nah. I am not the person I was before and I doubt I will be again.

A particularly bad week stress-wise (coping with a court hearing miles away from home re divorce and not allowed the day off that I had initially been granted) led to me having a stroke at work on that very busy Bank Holiday Saturday. A year ago yesterday. I have a "keep on keeping on" way and I showed no upset or stress at work. I went in without complaining, with a smile on my face as that's the way I am. That Saturday I had a numb tongue, face, right arm, hand and even my leg all down the right hand side, but I put it down to fatigue from my brain surgery issues. People noticed I wasn't my usual self - my writing was appalling, I dropped a full mug of coffee, my speech was befuddled. But no-one suggested I take a break, go home or call an ambulance. My son called an ambulance once I got home. I was whizzed into hospital etc and my stroke was shown to me on a scan the following week.

I've been off work again since and I have been really trying to get back to "normal". I'm not.

Occupational Health have me as "unfit for work" for the foreseeable. I applied for medical retirement and got rejected (again - was rejected last time too). I'm coming up to a 3rd stage meeting with Big Manager and HR and I have no idea what to expect. It seems to be a case of either going back to work and giving it another go - I would HAVE to insist on the support I need and HAVE to make my disability visible (not my usual thing). Or... be told my contract is terminated as I'm unfit for work. So... if that happens, what do I do? Look for another job when that's a bit of a worry as I'm not capable of doing the job I have loved doing for 34 years. How the heck would I manage with this poor old brain of mine in learning a new job? If too ill for work, but not ill enough for medical retirement... What the heck do I do? Any tips?

I would hugely appreciate any tips. I would also appreciate hearing your experiences. How you've been treated, how you've coped, how you are now.

[swedishblue11]

O'h Lulu, sounds as if you're being discriminated against at work for having a permanent brain injury. What a dead loss your colleagues have turned out to be. No empathy or understanding. May I just say, I think you are in the wrong Job! You need to surround yourself with compassionate, kind and understanding people.

I had a brain bleed and life never returned to normal. Everything I touched work-wise seemed futile, devoid of any meaning and I became more depressed with the struggle. Never any guidance as to what to expect after hospital discharge. All they wanted to do was drill the walls and fix aids around the house. I was having none of it!! As an ex-registered nurse, I was determined to plough my course and recover. It didn't work out as this is a "beast" to manage. As a consequence of struggling to return to normal, I developed chronic fatigue longterm and depression. In order to survive and thrive, to maintain a better quality of life, I walk dogs. I'm a nature lover too. Also, when energy allows and I'm feeling well and inspired, I make fused glass ornaments.

Perhaps, like me, you struggle to find acceptance of your brain injury. It took a couple of years before finally I took myself off to 'neuro-psychology' to have the prognosis confirmed and validated. My mri scans revealed why I felt the way I did.

By law your company should be making the necessary adjustments to support your disability. They are not adhering to any legal disability guidelines (laid down in law). Your HR department is failing!! Organisations that come to mind are Disability Rights and CAB.

Failing that, you may even get to speak to this man about PIP if you contact him. I haven't spoken to him personally but a friend recommended him as being a thoroughly decent empathetic "gentleman."

theguardian.com/society/201...

Sorry to waffle on. I'm just giving you my personal experience and perspectives on this crippling challenging condition. & If you met me, you might not suspect a thing as I always present at my best.

Moral of the story; the quality of your life is most important! x

[Lulu_Lollipop in reply to swedishblue11]

I've just read that interesting article. He seems a lovely man. Any idea how I could contact him?

[swedishblue11 in reply to Lulu_Lollipop]

I'll pm you

[Coffeegal]

I am so sorry to hear of your struggle Lulu. A friend with similar stroke problems is having same struggles at work and not shown any empathy by the company. She joined a union… I don’t know if that is a possibility for you. A union rep now accompanies her to HR meetings and they are making progress. I hope you receive some more replies. I have not worked since my brain haemorrhage. I get the top rate of PIP. I too look fine! x

[swedishblue11 in reply to Coffeegal]

Hi Coffeegal, how nice to meet you not that I know you, but have just read your intro. I don't often comment unless I have something to say. You are amongst friends here.

[Coffeegal in reply to swedishblue11]

Thank you. I am happy to be back among friends. I didn’t realise that if I commented on the Headway site it would appear on my Facebook page 🙈 I think it is good to have a place where we can talk openly about life’s reality with ABI without upsetting our family members or friends..

[swedishblue11 in reply to Coffeegal]

I'm just too much a scaredy cat to join facebook. Perhaps I'm missing out.

[Coffeegal in reply to swedishblue11]

I only use it to keep in touch with my family and and handful of friends. I think most people have moved on to other technology WhatsApp and other stuff but I’m not bothered. If there’s one thing I learnt during lockdown, it’s that I can do without anything except my family .. and maybe my iPad LOL!

[Lulu_Lollipop in reply to swedishblue11]

I joined Facebook a few years ago to be in a family and close friends group while my nephew was serving in Afghanistan. It's been a great place for me. I have re-contacted old friends that I never thought I'd see or hear from again (military child, 9 different schools, lived all over the place). Made some great new friends too. Best of all, I met my fiancé through a mutual friend. I'd never have met him otherwise

[swedishblue11 in reply to Lulu_Lollipop]

Wow Lu, that's an incredible number of schools!! Have you found your roots in adulthood or are you a restless free spirit, a bit like me (?) having had a similar upbringing - in six different schools! I I can't settle here after living in Saudi, Nth Africa, Germany, Belgium, the USA, Australia and lastly Sweden. After a visit to Canada, I wish I'd moved there.

[Lulu_Lollipop in reply to swedishblue11]

I put down very deep roots here in Rugby I loved travelling up until then though. Germany was my childhood place most of the time. We re-visited my old place in 2010. Loved it

[swedishblue11 in reply to Lulu_Lollipop]

Rugby looks lovely. I live outside Winchester.

I went to Windsor Girl's School in Hamm, West Germany....such happy memories!

[Lulu_Lollipop]

Thank you both very much, you've both been really helpful. Interesting to hear that you both look fine, yet have issues similar to me. I love dog walking. We have an exuberant, long-legged Labrador And I absolutely love glass ornaments, jewellery, decorations...

I am a member of our union (staff association) at work and they have given me a lovely lady to accompany me at the next meeting. She was with me last time round. Last time round though, I just went back to work as I needed the money. I wasn't well.

I wish you both all the best. You are inspirational. I shall click on that link tomorrow and see what else I find out about PIP assessments xx

[swedishblue11 in reply to Lulu_Lollipop]

Lulu, I think you may be pleasantly surprised if you click on that link. This 'IS' your man. I've been hearing so much about him from my friend who knows him well. It would be good to have him on your side. He's amenable to talk to as well. He lives quite close to me in Hampshire.

I love dogs! Dogs are great healers. I rescued a beautiful golden retriever soon after my brain injury, and she played a key role in my recovery. She had been living all her life on a torturous puppy farm, kicked out at the age of 5 - no longer useable and rattled with nerves. We gently recovered together. Her name was Layla.

[Coffeegal in reply to Lulu_Lollipop]

There are plenty of non-government website to view the questions that they ask you with PIP. Always photocopy every paper you send in and if you have an assessment, take somebody with you as some some of them can be a bit pushy?! The one that came to my home was lovely and my son was here as well. It’s quite harsh having to list everything bad about yourself (It used to upset me for a few days) And somebody who knows you really really well can say yes, but, what about the time you did this, that, and the other, which I have usually forgotten about. Anyway I hope some of that helps. Take care and feel free to message me x

[Lulu_Lollipop]

PIP assessment done this morning. No idea what to expect outcome-wise. The lady said it'll take between 10 and 12 weeks before I hear the result.

Thanks again for the help here

[swedishblue11 in reply to Lulu_Lollipop]

O'h no, that's such a long time to be kept in suspense. I wonder if there's a backlog on PIP? All the very best x

[Elenor3]

Hi,

I'm sorry to hear about the difficulties you're experiencing. I was offered medical severance from my much loved job after a lengthy failed attempt at a phased return. Similarly, issues arose from hidden disability issues. My manager was outstanding in terms of helping and supporting, but like you, it was probably too early to be returning to such a complex job. It's been a nightmare for the last few years but for some reason I continue looking at part time employment opportunities wondering if I could go back to doing something similar. Family thinks not..but I always think there's hope and if you don't try you'll never find out. Are there any other options with your employer? Could you go on to reduced hours and apply forPIP. To make up some of the lost income? Or are there any ess demanding jobs in your organisation? Be sure to check the disability legislation regarding 'Reasonable Adjustments' before you attend your meeting , and good luck.

[Lulu_Lollipop in reply to Elenor3]

Thank you. All the best to you xx

[PatientEV0019]

In some ways I have had a similar journey to you. I suffered from an aneurysm, and as a result, I cannot seem to cope with stressful situations.

My employer sent me to an occupational health specialist who advised that it is best practice (according to The Equality Act) for employers to carry out a stress risk assessment for employees in my position. Although this risk assessment was not completed as promptly as I would have liked, I am temporarily working from home away from my stress triggers at work.

Maybe you, and other readers could request a stress risk assessment from your employer?

[Lulu_Lollipop]

Hi again all. I'm going to read your helpful messages again as I have that Stage 3 meeting next week and I ought to start preparing. Yikes!

[Lulu_Lollipop]

Another update. Just received the verdict on my PIP application/assessment. Refused. I am worn out and too tired to phone and question them today. I will do, but it'll have to be next week. My partner has asked if I will authorise him to speak to them as he will tell them exactly how I am. Very different from how they "see" me over the phone.

[Lulu_Lollipop]

Had the meeting yesterday and I've been given 12 weeks notice. Dismissed on ill health. Taking a breather today and then thinking about PIP appeal and applying again for Medical Retirement. Been turned down for everything up to now.