Tag Archives: anxiety

“I have a love-hate relationship with my benefits”

Josie, from Bristol, was a nurse until 2008 where she developed a number of impairments which affect her health and mobility.

She has most recently been diagnosed with Mast Cell Activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

In this blog, she talks about her journey of getting different benefits she needs and the anxious days where her payments stopped completely.

I have a love-hate relationship with my benefits. I am grateful that they exist and that I can live as a disabled person, but I was a worker and I still find it hard that I can’t earn my own money.

When I became ill in 2008, I had just got a new job but hadn’t started yet. After a couple of weeks of no income, I went onto incapacity benefit . This was £ 73 a week. It was so little. Out of that I had to live, pay towards my rent and support my children.

My most heart-breaking moment

I did a depressing budget where I couldn’t afford to see my kids or contribute to them at all. My son asked if I was coming for half term to see him. I had to say no. It was my most heart-breaking moment. At this point, I had been denied three times by Disability Living Allowance (DLA) and was awaiting a doctor’s visit at home.

In 2011,  I was moved over to Employment and Support Allowance (ESA). I filled in the 40-page form and got all my paperwork together. I was so worried. I was put in the work-related activity group (WRAG). This involved a trip to the job centre on my birthday. I had two people with me, wore a face mask and hoped I wouldn’t need to get out of my wheelchair and need the toilet.

Josie, a disabled woman, wears a face mask to protect against allergens
Josie wearing her face mask

In 2012 , the job centre invited me again. I was now single and having more reactions so they rang me. I was so so nervous. They put me in the support group and realised I was too unwell to study and other options like office work were a no and I couldn’t even go in a charity shop due to my allergies no matter work in one. So I was released into the utopia of the support group.

It made me anxious and worried

In 2012 , I was reassessed for DLA. My three-year award was up. Reassessment meant a full assessment as if I was applying for the benefit from scratch. I thankfully had an amazing social worker who I will be forever grateful for. Between her and the Occupational Therapist manager, I got all the assessments and paperwork together (again) and was awarded five years. This is due soon and with the move to Personal Independence Payment (PIP), I am not looking forward to it.

This year a work capability form arrived. At first, I thought it was a mistake. I rang, it wasn’t. I can’t write easily or well so I started answering the questions into my laptop. I was worried and scared and avoided dealing with it for a couple of weeks. It made me anxious and worried.

I knew I wasn’t going to be able to achieve it in the time given, so I rang. I was told to get the form back when I could, with no mention of money stopping. Two weeks after the date on the form I had it ready and was going to get it printed by my carer as I get two hours once a week for errands. Then I missed a payment and that day had a letter saying my ESA had been stopped. I rang and it was confirmed.

Josie, a young disabled woman, following a reaction where her face has swollen and become red
Josie following a reaction with swelling and redness

I asked for help, this took five phone calls. The first said no we don’t have your case anymore, ring ‘X’. I rang ‘X’ and they said ring ‘Y’, ‘Y’ said ring ‘Z’ first. Eventually, I broke down in tears, sobbing. A man rang and I answered the questions (including really personal things like how heavy my periods are, how often I need the toilet at night, if I was continent etc) and he filled in my form for me. He reinstated my money immediately. I was told a copy of the form would be sent for me to sign but it never came. But my money continues.

In the four days it took for me to get help, I had a p45 and a letter saying my housing benefit had been stopped. If I had been in hospital or unwell and not able to do the chasing, my life would have completely fallen apart and I would have lost the roof over my head.

Two days after the phone call I had an anaphylaxis. Stress makes it more likely I will have one. Anaphylaxis is not a minor allergic reaction, it’s where you swell up, your throat closes and your blood pressure and pulse drop. This happens quickly (within three to five minutes) and I have to be ready to give myself an EpiPen, otherwise, I would die. I have had to have 78 EpiPens so far and I will shock again.

What needs to happen next

My needs are documented in so many different places – if only these records could be joined up so I don’t need to repeat myself. I’m eight years in now and I feel battle weary.

We need to look at this Work Capability Assessment and find a more holistic, compassionate way forward.

Visit Josie’s blog site to learn more about Mast Cell.

If you have any questions about benefits or employment, contact Scope’s helpline where we provide free, independent and impartial information and support to disabled people and their families.

You can also start or join a discussion on our online community.

Bullied for being disabled, but we turned it into a positive – Anti Bullying Week

Rosie and Glen were both bullied at school because of their impairments. In this blog they talk about how they moved forward with their lives and want to spread awareness about the bullying many disabled people face. 

Rosie’s story

“Being bullied made me determined to raise awareness about invisible disabilities”.

Being dyspraxic meant at school I always stood out like a sore thumb compared to others.

From the way I walk and move in a clumsy uncoordinated way which was different to others, always falling or bumping into others or other things.

To it’s made me socially anxious and struggle to maintain friendships. I always had and probably will have different interests to people my own age. I’ve always been seen as disorganised, chaotic, messy and a bit all over the place.

Being so different made me an easy target for being at the receiving end of some awful bullying. Words can have such an impact on your life and how you see and perceive yourself. It made me lose what little confidence I had to begin with and really struggle with my mental health and I would hear the words of what people were saying constantly. I thought I must really be stupid as it was constantly being said to me.

I put a lot of the bullying due to lack of awareness to what dyspraxia is, the fact that dyspraxia is invisible to the eye and negative assumptions of what I could or couldn’t achieve. As an adult I still struggle with anxiety and will never be a naturally confident person.

But my experiences made me decide that nobody should have to go through what myself or my family had been through and I was determined that more awareness needed to be raised about issues invisible to the eye.

Rosie 1 edited square

The bullying I experienced has taught me the power of words and why I choose mine so carefully and not make judgements and assumptions about others.

I work as a learning support as a college and know the value of time, patience and empathy can have on students who may be struggling. I have also been able to prove the people wrong who said I wouldn’t achieve anything.

Words have the power to encourage, destroy, make someone loose confidence in themselves or make someone feel hopeful. We can all try and help people feel hopeful.

Glen’s story

“I’m still a little bit shy and probably always will be, but I’m far more positive now”.

I first went to a mainstream school, but it didn’t go well. The teachers didn’t know how to help, and I was bullied by other kids because of my sight loss. So I was removed very quickly, and transferred to a school for the visually impaired that my parents discovered.

Of course, my confidence had been shattered, so I was very shy. Which led to some of the kids at my new school bullying me as well. Not because of my sight, as they were in the same boat, but because they realised they could wind me up easily.

Glen wearing a suit in a park

However, I made good friends, and the teachers were extremely supportive, so my confidence gradually improved over the years. And I even became friends with the kids who had teased me at first. Partly because I was being more successful than them, but I also got to learn more about them, which helped me understand their behaviour and put it into context. We learnt a lot from each other.

So things turned out well in the end. I came away with great friends, fond memories and good results, and got myself a degree and a job. I’m still a little bit shy today, and probably always will be, but I’m far more positive and confident than I would have been if I hadn’t moved schools when I did.

This is an extract from Glen’s blog Well Eye Never. You can read Glen’s full post about bullying here. 

If you have a story you would like to share, contact Scope’s stories team.

Do you need someone to talk to?

ChildLine – 0800 11 11

ChildLine is a free, confidential support service for children and young people. Their staff speak to thousands of young people every day – you are not alone. Phone 0800 11 11 or visit the ChildLine website.

Dyspraxia and social anxiety: why I’m not hiding anymore – End the Awkward

Guest post by Rosie, who has dyspraxia, which affects her movement, balance and sensory processing. For End the Awkward, she talks about feeling different, her journey to acceptance and how she stopped hiding.

I’ve always been aware of how differently I learnt and how tasks which everyone else found really easy took me so much longer. At the age of 4 I was diagnosed with dyspraxia, an invisible difference which is still very misunderstood. Dyspraxia is thought to be caused by a disruption in the way messages from the brain are transmitted to the body. This affects my ability to perform movements in a coordinated way, balance, motor skills and sensory and emotional sensitivity.

Every person with dyspraxia is affected differently. Even though I’ve always been very determined, I was also very shy and self conscious. I hated being centre of attention and any fuss made feel uncomfortable. I really struggled making friends as everyone was very different to me.

People didn’t understand

The lack of understanding which surrounds dyspraxia didn’t help at all, a lot of people didn’t and still don’t know what it is. I was misunderstood, judged and negative assumptions were made about me. I was called clumsy, careless, stupid, lazy and told that I simply wasn’t trying hard enough.

If you had asked me to describe what dyspraxia was and how it affected me I would have avoided the subject completely. I just didn’t know how to talk about it and was scared that people would run a mile if I disclosed to them. Awful bullying and ignorance at work had left me too anxious to speak, struggling with social anxiety and in a dark place.

Feeling different

A common theme for many dyspraxics is feeling different and struggling to make and maintain friendships. Over the years I’ve beat myself up a lot and wondered why I couldn’t be as socially confident as others, which is an ongoing challenge. I struggle with managing my emotions and can be prone to panic attacks and sensory sensitivity, which means the environment around me can be very overwhelming.

I’ve also spent a lot of my life hiding. Hiding from situations or environments which either triggered my anxiety or where I’ve felt uncomfortable. I concealed my  dyspraxia and social anxiety which lead to me experiencing depression. For ages I thought it was just me being me.

Rosie dressed up for an event

Anxiety was taking over my life

Social anxiety made me feel in constant worry that I was going to embarrass or make an idiot out of myself. I worried that I would have a panic attack, experience sensory overload in public or say something that nobody “gets”and have everyone laugh at me.

Then there’s the constant worry that you’ve done something to upset someone and that people hate you and are simply putting up with you. When you’re anxious your whole body can tense up, you can start feeling sick and you can struggle to give eye contact, which is hard enough when you’re dyspraxic. It was easier to avoid doing anything or going anywhere.

After hitting a very low patch I realised I couldn’t  go on like this. Anxiety was slowly taking over my life, stopping me enjoying the things I loved and leaving me fearful, low and constantly on edge, unable to sleep and with zero confidence and self-esteem. The more anxious I became the more clumsier I was and the more mistakes I was making and the more I beat myself up. It was a vicious circle.

Meeting others helped me stop hiding

I got involved in Dyspraxia Foundation where for the first time I felt like I could be myself. Nobody judged me if I made any mistakes. I met others who were dyspraxic and I didn’t feel so alone. I began to learn about how dyspraxia affected me but also the strengths which dyspraxia can bring, which to me are being caring, creative, able to think outside of the box and I’m a very determined soul.

By spending so much time hiding I wasn’t showing the world all of Rosie and I was missing out on so much. With the support that’s out there, I’ve been able to achieve a degree and a masters degree. I’m also learning strategies to help me cope with day to day life and support my mental health.

Ending the Awkward

I’ve been able to help others by writing blogs and raising awareness, helping them feel less isolated and alone. It’s given me more empathy when supporting students in my job as a learning support assistant. I’m determined that nobody should go through or feel what I have. Learning to be kind to myself is something I’m still working on but I’m fighting my fears one little step at a time.

That’s why I’m getting involved in Scope’s End The Awkward campaign. Disability and difference is nothing to be scared of – we’re human beings with feelings. A little bit of patience, time, and kindness can go a long way. Nobody deserves to be made to feel embarrassed or ashamed of being different. After all, wouldn’t the world be such a boring place if we all were the same? You never know what you might find out when you take the time to get to know someone.

You can stay up to date with everything End the Awkward on Twitter and Facebook using #EndTheAwkward or visiting Scope’s End the Awkward webpage.

To read more from Rosie, visit Rosie’s blog.

Instead of venting my anger towards people, I’ve put it into a song – Smiiffy the rapper

Smiiffy is a 21-year-old rapper from Birmingham who is looking to challenge attitudes and raise awareness of mental health and disability.

For 30 Under 30, he spoke with us about how he is using his music to spread awareness of mental health and what he hopes his music will achieve.

It’s really important to be open about impairments as it can help break down barriers and end stigma.

I have Bilateral Perthes’ disease which means my cartilage is degenerating. It’s quite painful now and again but I’ve learnt to live with it. I’ve had around 15 operations and probably a lot more to come in the future.

I also have depression, anxiety, memory loss and probably a long list of everything else!

I’ve been quite open about it, however I haven’t always been confident in talking about it. I always had the fear of being rejected by people if I told them. Lately, I’ve become a lot more comfortable from support online and have opened up a lot more.

Smiiffy, a young disabled man, smiles by a microphone

I find comfort through using humour and writing music. My music is all about my experiences but I sometimes also write songs about experiences of people I’ve met.

Knowing that there are people listening to the lyrics and finding them relatable is brilliant.

You wouldn’t believe I have anxiety when I perform on the stage, everything just kind of goes away. I’m in my element and absolutely love what I do.

An exclusive rap for 30 Under 30

It’s time I show some clarity

I face facts and reality

Every single person is perfect the way that you are

Don’t let any physical or mental issue break who you really are

I’ve had shackles on my wrists and I’ve been scared to speak

I’ve had times where I’ve let tears take over my cheek

But now I’m stronger than that, that’s what you call unity

And when I feel this strong there’s nothing that anything can actually do to me

You can see more from Smiiffy on his YouTube channel and by following him on Twitter.

Smiiffy is sharing his story as part of 30 Under 30. Throughout June, we have been sharing one story a day from disabled people who are doing extraordinary things. Visit our website to see all of the stories in the campaign.

A question of confidence

A guest blog from a volunteer at Scope’s Our Generation project. 

After two bouts of illness earlier in the year, I found I had lost my confidence and was struggling with anxiety and depression. The Health and Wellbeing visitor called and referred me to Our Generation Mentoring and Befriending Service. I hadn’t heard of the service and to be honest, I didn’t know what mentoring was. The Scope Co-ordinator called and explained everything. They matched me with my Mentor and we met at the office, which felt safe for our first meeting.

The meeting went very well and my Mentor really made me feel at ease. One of the things which we discussed was that I should like help to become more computer literate as my daughter is living overseas and it would help us to keep in touch. I made such good progress I surprised myself and have even bought an i-pad! My confidence in using it increases with each meeting. I have found that this increased confidence has permeated other areas of my life and I am now able to meet my Mentor in town.

Every two years I visit my daughter. I am due to go next year but the anxiety and depression I have experienced has made the lone journey seem incredibly daunting. However, since working with the Our Generation Mentor I can feel my confidence returning and I’m beginning to really look forward to this years visit.

I recently attended the Our Generation Xmas party which I thoroughly enjoyed. Just a few weeks ago I wouldn’t have believed that I could have the confidence to go along on my own.

The Co-ordinator has suggested I attend the Mentoring Skills Training Course at the office as my next challenge and I surprised myself by saying that I’ll think about it!

All I wanted was to go back to being ‘normal’

This blog entry is from one of our new mentors from Scope’s Our Generation project in Wakefield.

I am a 52-year-old woman originally from Glasgow. I moved to Wakefield six years ago with a new partner, following the breakdown of a relationship of 20 years. For the first three months we lived with relatives of my partner which I found extremely difficult. I had been suffering from depression, anxiety and OCD for a long time and I found living in someone else’s home a nightmare to deal with.

The situation took its toll – I was so desperate to have a place of my own that we declared ourselves homeless. Due to my medical difficulties I was classed as a priority and we were given a bungalow. All my belongings had been left behind in Glasgow so we moved in three days before Christmas with no furniture. I had also left my adult daughter behind in Glasgow which broke my heart and I found it hard to cope with the guilt of leaving her.

I hit rock bottom – my depression and anxiety got worse, I gained weight and hated myself. I felt I had nothing left to live for. It was at this point that I was put in touch with Scope and the mentoring service. At first I didn’t think it was for me as I had never needed support or help from anyone but I couldn’t cope on my own any longer, so I finally made arrangements for a Scope worker to visit me. I found her really compassionate and caring. She introduced me to a mentor who started to come to the house and eventually I found the courage to start going out. It was only small things like going out for a coffee or for a walk round the supermarket but it was a start.

All I wanted was to go back to being ‘normal’ – simple things like getting on a bus alone or going into a shop without having panic attacks. With the support of the service that is what I have managed to achieve. I still have times when I feel depressed and down but I now have friends who I know won’t and don’t judge me. Thanks to Scope I have some sort of life back and life doesn’t seem as bad as I once thought.

I have just finished the mentoring course with Scope and now hope to become a mentor to others. I just want to give someone the strength and courage to live their life as fully as they can. I am a different person thanks to the people at Scope and I hope I will make a huge difference to someone else’s life.

Our Generation is a free mentoring and befriending service that offers one-to-one support for disabled people and people with long-term health conditions over the age of 50.