Staff from an active networking group are leading the charge to change people’s views of disabled people in the workplace, especially those dealing with hidden disabilities.
The Trust’s disability staff network has launched a series of videos of group members talking about the issues they tackle every day.
The short, but moving testimonials include staff talking candidly about dealing with mental health, autism, myalgic encephalomyelitis (ME) and multiple sclerosis.
Nurse talks through her experience of working with multiple sclerosis
Interviewer: We’re joined today by a Trust nurse who would rather not reveal her name or identity on camera. It’s quite a personal story she’s got to tell. Could you start by telling us a little bit about your condition please?
Nurse: I was diagnosed with multiple sclerosis (MS) in the 1990s. It started off where I had a lot of headaches and I lost my balance. When they did a lumbar puncture they diagnosed me with MS.
Interviewer: And how does that affect you in your everyday life?
Nurse: Just getting out of bed in the morning. The tiredness is the worst.
You’re tired when you get up and it gets worse as you go along the day. You can sleep for about 10 minutes or so while trying to have a sleep in the afternoon but you never get to be a very active person who has loads of energy. You just exist during the day.
Interviewer: I notice you walk with a cane as well so it affects your mobility as well?
Nurse: Yes, I’ve got left-sided weakness and a couple of weeks ago my leg gave way going down the stairs. That’s why I’ve got the stick at the moment. I’ve been managing really well with my medication.
Interviewer: Why did you join the disability network?
Nurse: I just wanted somebody to talk to who understood how I felt.
You can be in a room full of people and you’re alone. And they’ll talk and carry on – what they’ve done and what they haven’t done and you’re sat there thinking ‘I wish I could do what they do’.
So it was lovely just to go talk to people who understood. Nobody ever asks you how you are or how you’re feeling because they don’t want to hear the answers whereas the group has been really supportive.
Hearing everybody’s stories and them listening to myself, they help you work out how to cope with certain situations and they give you information as well.
Kris, the network lead, has been doing quite a bit of counselling and he’s helped me realise that I feel sometimes like I’m not an important person. Kris has improved my confidence so that I actually say something whereas before I’d just go into work, put my head down and get on with my work.
Interviewer: It sounds like the emotional impact is almost as devastating as the physical.
Nurse: Sometimes I vomit before I go to work because I find work sometimes so hard. It’s mentally as well as physically. But I love my job.
I love the patients, I love talking to them, I love helping them. That’s the reason I come to work.
It’s so hard struggling in some days, just even getting out of bed. But the patients are the best thing ever.
Interviewer: What would your hopes be for the future?
Nurse: I’d like to stay in the NHS and I’d like to do something to help people because I’ve got so much experience and the conditions I’ve experienced as well. I understand what these patients are going through and I just want to help them.
Interviewer: Thank you very much.
Nurse: It’s alright.
Nic’s story
One video interviewee is pharmacy support worker Nic Samuels. Nic, who suffers from bouts of serious depression, says in her video: “People don’t understand that when that black cloud starts and you just get that black cloud in your head. There’s nothing you can do and you just feel so ill.
“It’s horrendous, this feeling of pain in your mind.
“You’ve got no logic or rationale. Your brain just will not function, it’s just full of lowness and it’s the most horrendous feeling in the world.”
Nic advises her colleagues dealing with similar issues to ask for help, commenting: “Anybody that’s suffered from it should feel they can get support from the Trust, because I have. You feel so much better when you have been and spoken to someone.”
Pharmacy dispenser shares her views on working with depression
Hi, my name’s Nic Samuels, I’m a dispenser in the pharmacy at North Tees and I’m an equality officer for Unison.
I suffer from severe depression and I would just like people who suffer from the same to know there are people you can go to in the Trust.
I’ve been helped a lot.
I was referred by my managers to a lovely lady in health and wellbeing who is absolutely fantastic and when I come out I feel like I’ve been walking on air.
But people don’t understand when that black cloud starts and you just get that black cloud in your head. There’s nothing you can do and you just feel so ill. It’s horrendous – this feeling of pain in your mind.
People think you’re drunk. But you’re not. You’ve just got no logic or rationale because your brain will not function.
It’s just full of lowness and it’s the most horrible feeling in the world and anybody that’s suffered from it should feel that they can come get support in the Trust. Because I have.
And, like I say, you feel so much better when you’ve been and spoken to somebody because the days are very, very dark when you’re doing it on your own.
It just takes people to take a step back and realise that when people are suffering from depression it’s not their fault.
Some people are born with it, some might have a catastrophic accident that’s happened in their life or an issue and we all need to be mindful of this.
Lots of people are but because mental health has been such a taboo not to be spoken about for years, now it seems a lot of people are free.
But if you do suffer from it, you must come forward and you must seek help because it’s nothing to be ashamed of. We all need somewhere to go when we’re in the depths of the darkness.
That’s all that I can advise people. Just go to anybody, anyody at all, and speak about it.
Please don’t keep it in.
The videos will be published on social media by the Trust on Disability Awareness Day on Sunday 12 September.
Kris Bell, chair of the disability staff network, said: “Many disabilities are hidden. Not every disabled person is in a wheel chair.
“The Trust has even fitted signs to the disabled access toilets to remind people that not all disabilities are immediately obvious.
“We hope these short videos illustrate the challenges some of our friends, colleagues and family members face every day. And how we can all make small adjustments to understand more and be more supportive.”
Andy’s story
Quality technician Andy Mitchell discusses the Trust’s disability staff network
Interviewer: Can you tell us your name and your job please?
Andy: I’m Andy Mitchell, I work for the quality control labs and I’m a quality technician.
Interviewer: Looking at you, nobody would really guess that you have a disability or a long term condition.
Andy: Overweight, possibly, if overweight is a condition. (Andy laughs.) Basically I have an underactive thyroid which offsets mental issues within myself.
I’ve got mental health problems. I’ve gone through the whole versions of it – whether that’s wanting to end my life.
It’s hard to talk about. Whether it’s the anxieties or just the up and down nature of my character.
When I first joined the Trust, I didn’t realise I had this condition. It was probably undiagnosed for round about 10 years.
I started out as someone who was probably deemed troublesome. I got myself in trouble. A lot. Which I’m not proud of.
And I feel that as I’ve gone through and earned promotions, and people have understood me more, I kind of feel like that stigma is still there for myself. This is why it’s quite hard to speak about.
And maybe people who watch this will probably understand and people that don’t will see me as that laughy, jokey guy.
But when you go home, that’s a different picture.
Interviewer: How does it affect you at work?
Andy: It ranges. It ranges from day to day.
Generally you just don’t want to get your head off the pillow some days and it’s a struggle so you use all your energy just to come into work.
There is times that I have sat in the car park for an hour in my car debating whether I should go in or ring in sick. Which is not proud to admit. I know my boss is probably watching this.
And there’s time that I come in and I’m almost like the life of the party. I keep everyone going through bad days.
And that unpredictability has probably made it hard for my colleagues to work with me and I understand that. It’s really hard to be one version to the next when your levels are all over.
So you kind of feel like you’re a victim of something that you can’t help which has been my real battle I think.
Interviewer: So, how’s the disability staff network helped you?
Andy: Hearing people’s stories before filming this has inspired me to speak up more, be there more for people.
I try to be that way but I think there’s going to be a lot more friends made out of this and I think a lot more voices, a lot more people you can turn to.
There’s people in my workplace who probably fit the disability group. There’s people who fit the women’s group, the men’s group.
I’ve certainly seen a lot of mental health in my workplace – good and bad.
I think the fact that these films are going to get broadcast, might just give them a chance to step forward and seek the help that I have because the Trust has been fantastic with me and I just want to shout out to Rachel Hillerby who really made me feel up there when I probably didn’t want to come back here if I’m being honest.
Interviewer: What would your message be to other people out there about people who’ve got conditions that they’re working alongside? What would you say to somebody?
Andy: Do you mind if I look at the camera and say it?
Interviewer: Absolutely.
Andy: You really need to speak but because I didn’t for a long time and I’ll try not to cry on camera. These things aren’t seen but they are there. Ok?
On Monday 13 September, the disability staff network is hosting a series of sessions. The packed day of staff-focussed talks, seminars and interactive sessions highlight the work of our disabled employees and the challenges they overcome every day.
The sessions will be taking place at both the University Hospital of North Tees and University Hospital of Hartlepool.
Helen’s story
Speech and language therapist discusses working with chronic fatigue syndrome
Hello, my name’s Helen Parker. I’m a specialist speech and language therapist working with children and I’ve worked with the Trust for four years.
I assess, diagnose, treat and support children with a range of difficulties, including autism, stammers and difficulties understanding and using sentences.
Outwardly, I look well but I have ME which is sometimes called chronic fatigue syndrome. This means I have a lack of energy and everything I do causes me fatigue and pain, including making a drink, walking upstairs or finding the right words I want to use.
It’s a lot more than feeling a bit tired. It’s more like constantly living with really bad flu.
The way people act around me can make a huge difference.
I have to get the lift at work and sometimes colleagues will insist on still using the stairs, meaning I feel isolated and miss out on the conversations they’re having.
The colleagues who get the lift with me make such a difference.
Our office is only on the first floor so it’s not far and sometimes when I’m in the lift people will say ‘you’re only going one floor? You should have walked and got the exercise’.
I don’t usually challenge the fact there’s a reason I’m in the lift and I’ve got a hidden disability but it does make me feel hurt.
My manager’s been amazing at putting in support, like adapting where I work to minimise the travel I’m doing and ensuring that I don’t get bogged down with demands.
I’m also part of the disability staff network and it’s an amazing place to share and to be able to spend time with people who understand the struggles that I’m going through.
It’s often the smallest things that people do that can make a difference like getting the lift with me or offering to pick me up some lunch while they’re down at the cafe.
The small things show that people care and understand.
I know that people won’t get it right all of the time but showing that they’re trying is a really great start to me.
Matthew’s story
Clinical coder Matthew Andersen talks through working with autism
My name’s Matthew Andersen, I work in clinical coding.
I’m on the autism spectrum. So what that means is my brain’s wired a bit differently to most other people.
Things that have come out are having difficulty with social cues and a lot of social interaction. Stuff like that. That affects me on a day to day basis at work.
I have difficulty with changes in routine and things like knowing what to do next and anticipating things which makes my day to day life very stressful.
Coming to work can be difficult when it’s having to do different things everyday. That level of anxiety that comes from social interaction with anybody, even people that I get along with really well and I know really well. It still gives me a lot of anxiety.
Trying to do my job on top of that can be very difficult.
Little things can make a massive difference in my day to day life. I struggle with telephone calls because I don’t process auditory information as well as I do visual information so phone calls can be difficult and be really stressful so things like just moving the phone off my desk can just make my life infinitely better or people contacting me via email instead or warning me about changes that are going to be made in my day to day routine.
It reduces my anxiety levels such a massive amount and it’s just these little things that other people who I work with can do that make such a massive amount of change and makes my life a lot easier and better.
People who I work with on a day to day basis are really supportive. They don’t treat me any different and if they can help in small ways, they do.
It’s raising more awareness and people knowing how to help.
That’s the biggest challenge of having autism. And working while you have autism.
