Have you been able to return to work following your brain injury?

[headwayuk]

We’re looking to review our information factsheets on this and it would be helpful to hear about your experience of returning to work. Did you return to your previous job, or look for a new job? What strategies helped you to settle back into work? What would you like to tell other brain injury survivors about returning to work?

[Jamajo]

I returned to work 6 months after my craniotomy on an 8 wk phased return. I worked 24 hours in a wallpaper shop. During my phased return I realised I just didnt have the stamina or strength to do deliveries and the fatigue after being on my feet was hard. I asked to change my contract to 18 hours but even that was unmanageable. I have had to leave a job I loved to working on a till 16 hours a week. I feel like a failure and hate how my life has turned out. Even though the job isnt as physically demanding, it is quite mentally draining and I come home exhausted after a 4 hour shift. I am glad I have a job though and havent been as unlucky as some who havent been able to return to work.

[Plenty]

I would like information on how to get the employer educated on brain injuries and it’s effects on the employees.

And some brain injured employees leave the job as they find it to difficult.

Are they getting the correct help? or would a neuropsychologist, with the knowledge of brain scans and assessments, confirm that the employee is unfortunately not going to be able to do the job that they did before the head injury.

[headwayuk Partner Headway in reply to Plenty]

We do have a guide for employers which can be downloaded here - headway.org.uk/media/4123/b...

You are also very welcome to contact our helpline on 0808 800 2244 or [e-mail]

[HungryHufflepuff in reply to headwayuk]

A few days ago I handed in my resignation. I don’t know if it would have made a difference to me had I known about this guide beforehand. Maybe not, because there are a number of reasons for me resigning. I’ve never resigned from anything before. For some months I’ve been saying about how tired I am, and the awful headaches. One time when I said this, the person in management pointed at my younger colleague and said, Well he’s not tired is he. It’s just you.

I don’t understand my own condition so I suppose I can’t expect someone else to. But hopefully this guide can be helpful to other employees and for employers who want to have happy and healthy staff.

[Marnie22]

I had to try to return to work a couple of weeks after my brain injury as I had used up my sick pay. I had told my employer about what had happened and despite this they offered me ONE extra day off with pay.

When I returned to work I told them I needed to take rests (I worked from 8.00am to 3.15pm without a break and then finished at about 5 each day normally, ) I explained that I was following advice from Headway. I also gave them copies of information from the Headway booklets that I had.

My boss, (who was a psychologist,) refused to believe that I had suffered a brain injury. On my first day back he tried to change my work location, the team that I worked with and the actual work that I did. When I tried to explain that I couldn't cope with all the changes at once while I was trying to recover, he shouted at me, telling me, 'If you can't do the job, just go home '

I tried to carry on, having the breaks, but no one explained things to my colleagues, some of whom got annoyed that I was getting these breaks.

Finally, one afternoon I became really unwell at work due to hyperacusis and sensory overload. It was extremely frightening. I overheard one of the managers complaining to another one about me being unable to work. I managed to put together a short email noting this and sent it to my boss. A couple of hours later I got an email suspending me from work. I never got to go back. I was put onto sick pay by my boss even though my GP had not signed me off sick. Suddenly I couldn't pay my mortgage or any of my bills.

Later on I saw an occupational health consultant who said that reasonable adjustments could not be made for me to return to work. He also said that it could be harmful for me to return.

I tried to apply for other jobs, initially full time and then part time, but about ten months after the injury I realised that I was kidding myself - the severe fatigue and sensory overload (together with other difficulties,) made it impossible for me to work.

It is now almost four years since my injury. I miss my job every day. I had been in that job for twelve years

I should like to pose one question: when someone has beei unable to work long term, is there any support or way for them to judge if they have recovered enough to try and get back into the workplace? I don't have any idea how I would judge this. I often still overestimate what I can do.

[RecoveringH]

For me the first hurdle was the doctor. My BI changed my personality from an outgoing proactive organiser able to assert myself where needed to put my point of view across in a clear and direct way.... to a vulnerable lacking in confidence (because I could not depend on having a healthy body daily to wake up to) bad communicator afraid of saying the wrong thing lest the reaction in the persons face I talked with was full of disappointment which would cause me stress and send me scurrying off home to hide for a few months to work out what I did wrong.

Turns out - what I did wrong - was not communicate clearly my symptoms - so the doctor could not see what was needed. It took me 4 years to get to a place where I could ask for the right kind of help AND BE HEARD AND RESPECTED and that involved taking a family member into the doctor with me. Mainly so we could talk afterwards and discuss what the doctor had said, checked my interpretation was correct and then make the correct follow up appointments. Doctors are so busy, non proactive brain injured people don't reach out, don't push for more, don't ask for more, don't question, assume the problem is them, assume they are malfunctioning, assume they aren't good enough, assume they communicate clearly and logically and assume there is no point in keeping on trying to be heard.

BI people should assume their thoughts are jumbled and spend time writing down their symptoms, then put them in order of priority, as the doctor has 8 minutes and told me in several appointments (5 weeks between each one) that there was no time to deal with everything on the list, which would I like to focus on ! The state of the NHS right now is not conducive to helping and supporting people with BI. The NHS are trialling video appointments at the moment so you can have a home appointment with the doctor and I hope this will facilitate more BI people seeking out help from the calm quiet safety of their own home so they get the help they need to return to work.

Doctors should have the ability to within the 8 minutes, instantly refer the same person to another room (or a second appointment), where a "nurse" goes through a number of questions on a tick box questionnaire, to identify ALL the gaps in a persons abilities, With a score of higher than X, they instantly get referred to a brain injury life impact diagnostic specialist unit to identify a/ if help is required for daily living, 2/ if help is required to find a job 3/ if help is identified for social networks (that includes simply providing a free counselling or Samaritans helpline). Such simple things can mean so much to a BI world of silence and fear.

Often we are not aware of our gaps. I had a stutter for 2 years and until I arranged a mock job interview over the phone where feedback was direct and honest and he told me, you have a stutter, I was not aware of it. He also said I didn't stick to the point so in an interview, my strengths and suitability for the role might be easily missed by any future interviewer. Once I was aware of the stutter, I got rid of it. If its not on your radar and the people around you don't give a **** enough to tell you, you simply continue down the existing path. I practiced my elevator pitch (look it up online) to help interviewers focus on my strengths and learnt a few sentences to say when asked "tell me about yourself". The way I had to remember what to say was by using pictures, body parts or rooms in a house.

If you have four things to say, select the first thing and put it in the first room in the house after you walk through the front door. Then the second thing in the next room, the third in the next room and so on. When asked tell me about yourself, you simply walk through your front door, enter the first room, and there is the first statement to say, then walk into the second room, and the memory easily pulls the next sentence into the head. Putting sentences into rooms is aided by images, emotions and smells to facilitate memory.

There should purely be just a service for mock interviews for brain injured people. It should be free - always - however number of times the person calls. Each mock interview should be for a different job. After each one, the person gets better at it. The mock interview will also indicate to the BI person if that job would infact be a good fit for them. The BI person supplies the interviewer with the advert. Then a 10 min interview on the phone begins. Or face to face on Skype if deafness is an issue to enable lip reading.

So I am back at work. Temping. 40 hours per week.

Strategies to settle back at work

- control your diet - eat routine home cooked meals and take them into work. Its cheaper, safer and supports continued health. Work can be stressful and diet is one of the first things that goes when the going gets tough.

- plan to have 10 hours in bed each night and a minimum of 8 hours. Even if you wake up, you have enough hours under the belt to deliver a full day in the workplace and not suffer with lack of sleep

- cleanse socially - be brutal - if you have people around you that zap your energy, don't support you, don't respect you, EVEN if its a family member, disconnect until you gain confidence. These types of people feel uncomfortable around you, knowing your life challenges are different but they are just unable to adapt to you now, and have no interest in discussing your challenges, your jubilations of BI recovery. Cut them out. Stop answering the phone. You will feel SO MUCH BETTER.

- don't disclose too much about your past at work - perhaps to the senior hiring manager - but for the rest of colleagues - your background is not so different to others. You discover that most people have something going on behind the scenes whether that be regular migraines, diabetes, hearing loss, dyslexia, OCD. I tend to keep my mouth shut, listen where appropriate, smile and say nothing personal about my 'journey'. They would not understand. I don't need them to understand.

There was one incident when a colleague commented on my answering the phone and taking messages. "I cringed when you said that " she said. It was a full blown scwortish accent on the phone and my ear could not understand his words. And I said outright, sorry I don't understand you, please could you repeat that. I finally did understand after he said it another way with a few jokes thrown in. I did not feel it was an issue. He was not upset on the phone.

But she took umbrage and felt it was her place to comment on my telephone manner. She advised me that I should not say things like 'I don't understand you'.

And I replied to her, sorry, I do not agree with you, what if a person has a brain injury. So long as you act from the heart with good intentions, people usually get around to understanding and having a little laugh about any misunderstandings without there being any issue. I don't see an issue here.

She turned bright red and was quiet. Nothing more has been said. I'm pleased I was able to put my point across without offence but standing my ground without explicitly saying I have a brain injury and sometimes struggle to understand people with strong accents on the phone.

The last advice for getting back to work. Be prepared for judgements, mockery, unkindness, sarcasm about you and your abilities at work as compared to others. Be ready to respond kindly respectfully and firmly to protect your corner. You have been through enough and no one needs nasty behaviour at work when all you are doing is pulling in an income to keep yourself away from the food bank.

By the way, this female had had a heart attack, breast cancer, recently had pneumonia. Everyone has a story. Yours with a BI is no different. Get out there and show the world what you can do. Focus on your strengths and however low paid the work, whether a temping or working on the tills job, be proud of what you have achieved in the simple act of holding down a regular hours job.

[Marnie22 in reply to RecoveringH]

A very perceptive and comprehensive post. Lots of good ideas. 🌸🙂

[Alb64]

My husband was unable to return to work after his hypoxic brain injury 3years ago.He is now unable to read or write or drive so would have been unable to return to any form of work.He needs care 24/7.

[sashaming1]

No, neither. You may need to take special measures to overcome brain issues (like taking lots of notes to yourself to accomplish specific job tasks or let coworkers know of your situation and encourage them to make extra-good communication efforts to you) that would limit your working ability.

[FatigueMox]

12 August 2007 (I was 27) I was transferred to ICU with a Venus Sinus Thrombosis (Blood Clot in Brain) which had basically exploded. 6 weeks in Hospital. On waking despite not having changed massively characteristically there were two large problems.

1. No inhibitions if I thought someone was Ugly I told them (Caused great hilarity amongst the Ward staff!) Fortunately this hasn’t lasted.

2. I’d lost my memory. (People still really struggle with this concept.) People’s names especially close friends was a real problem and also weirdly enough food names!

Before being ill I had been on hols at my parents home in Cornwall. Working life was back in Berkshire as a busy Events Manager during the week and Riding Instructor at the weekend.

Fortunately I had been on hols at my parents in Cornwall when I was taken ill. Waking up in hospital I have mixed memories.

1. Apparently I asked Dad for his Credit Card so I could check my work emails (there’s dedication for you!!)

2. I struggled hugely with the right words. So after being shown the food trolley one day the ladies in the ward wanted to know what it was (Macaroni Cheese is now known as either Macro-media cheese or Microsoft Cheese to my friends)

So on a planned discharge it was decided rather than going into a re-hab come I would convalesce with my parents. Despite my protesting about wanting to go back to work it was back home to Hotel Mum and Dad with no planned date for my return.

After robust planned sessions by OT team and some often stern talking to by my Mum in particular, I was finally back driving and finally allowed by my Neuro team back to work and what was a very well planned and orchestrated phase.

The return to work:

Jan 2008: It was a strange thing to do to drive back to Berks for a meeting with my boss, our HR team AND my parents. That visit in itself has many lovely memories for me as I was greeted back by a number of friends and colleagues and it was lovely to be able to share my work place that I had loved so much with my parents.

The plan:

Start back in Feb 2008. 2 mornings a week?!? I thought they were mad!!! I was fine as I kept telling everyone (Hindsight now helps me understand why Mum and Dad were an integral part of that meeting) For the first two weeks. Then up to 3. Then 4 etc. In the meantime I had to find a room to rent find a GP and all the usual things that go with re-location.

The Return:

Butterflies, extreme nerves, such real vivid dreams that at times I couldn’t separate the imagined from reality but this was it I was back!! The plan was for me to go in late (standard hours were 9 - 5:15 with an hour for lunch) so I started at 10. Would have a full hours lunch break and then drive home. I had MASSIVELY underestimated how much energy all that adrenaline and excitement would drain me. Being back in planned meetings even with a couple of people I would try desperately hard to concentrate but it would always feel as though there was a veil of cling film closing in on me.

Improvements:

We stuck to the plan. Most of the time I tried to rebel (that’s my stubborn and slightly naughty nature) but work and friends and family and my medical team had my number!! One day I was supposed to be leaving mid afternoon and in the way out of my office I thought I’d stop off and talk to my friends. My boss knew me too well. She dialled down within 10 minutes (she had spies) to check if I was there. Some harsh threats from her including “I’ll phone your parents!!” had me almost sprinting out of there. It didn’t end there...the grief I got from my parents was like being a teenager again and missing curfew!! By the time I was back in the office doing a full day it was then recommend by my medical return to work team that I should in addition to a half hour lunch break have a full hours sleep break. I was very lucky that there was a hotel facility on site and the housekeeping team did a fab job to always have a room prepped for me away from where other rooms were still be turned over. A fab set of earplugs did wanders.

The Return to full time work:

End of July 2008. This was it so was back full-time. Still had the issues of concentration, filtering out noise and focusing on key conversation going on. Still massive problems with fatigue. Planned menus for the week really helped so I reduced meal preparation during the week and even planning and preparing the events I did at work had to become much more structured. Last in the box was the first thing I needed and took out when I arrived at venues. Could save up to 30 minutes which when doing an event is critical either for patching up make-up or getting an extra cup of tea. Something I’ve been able to pass onto other colleagues.

Memory Loss:

For all of us that go through this it’s unique to us all. For me it was like my memory filing cabinet had been turned upside down and all the memories had fallen out and most but not all had been put back in, so there was gaps. But these weren’t in any chronological order. Eg a friend. I found I knew the name of her Mum and Dad all her pets names, but couldn’t remember her name!!

Over the years I’ve been to friends weddings and been “re-united” with old friends some who I could remember (thanks to FB) and others who I had no re-collection of.

Fatigue:

After my original boss left I had another. Who didn’t understand my by then seldom but occasionally used sleep breaks. “We all suffer from fatigue!!” So if you feel tired drive home!!! Doesn’t work like that. My job was fairly high energy and often there was a huge amount of highs and Adrenalin even now if Adrenaline is up I know it will come crashing down, often like jumping off a cliff.

The Now:

I’m now married (10 years this year!) and my fantastic husband often has to pick up those pieces but he and my close friends and medical teams who all still keep an eye on me still know when to dish out the tough love!

I’m still at the same place of work although have had several different jobs all an improvement on the previous one. Several new bosses (Don’t know what that days about me as a colleague!! Have now been there 15 years and am considered by many as part of the fixtures and fittings. Occasional social nights I go out with work colleagues there is always a curfew in place from my husband and close colleagues know to make sure I stick to it. Those that are new don’t understand this, why because they see me as a “normal” person.

The Limitations to Energy:

I have to carefully plan each week. Even when if I feel fine at a weekend I won’t go out with friends if I know I have a big event or meetings the following week. I’m now a tough boss and don’t have much sympathy for colleagues with an active home life who then come into work and whinge about being too tired but then tell me they’re off that night seeing friends.

Return to work is tough, but having a good employer and being honest with them about your brain injury is key. There’s only so much faking it to making it you can do. The more honest you are with them the more they can identify when you may have reached your limits, but more importantly it helps educate them about brain injuries and long term return to work plans for other colleagues and friends.

[Hidden]

I had my TBI when I was 14. Doctors mainly said it will affect you but we can't say how and when just get on with your life, see what happens but pace yourself. They did say don't be a pilot or submarinor as the pressure could be too much. Parts of disability where unknown at the time though. Anyway had lots of problems pushing myself too far too fast taking on too much responsibility is serious jobs. Often can't cope end up our of work , unable to function again and again. Sorry to state obvious but I learnt we can't 'beat' our disability, but we can't manage how we cope with it. I find the pain and hard times come when don't or can't listen to our bodied feeling us to rest. It builds up and then I end up looking jobs, getting depressed, Dr recommending inappropriate medication that my brain can't handle and being out of work for ages.....

[371960]

I returned back to work on a fazed return, around 16 months after being diagnosed with SREAT... I felt that I needed to return to prove to myself that I could work.. I managed 7 months, with lots of sick days during that time... I was taking steps backwards in my recovery, and I eventually had to admit defeat, with help and support from my neurologist, I was retiered on medical grounds.. it wasn't easy to come to terms with..