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Personal Stories

Please find below personal stories from the Warwick community:

If you'd like to share a personal story of experiencing disability please complete the form here.

 

Crohn's Disease - Anonymous

"I have Crohn's disease which is essentially inflammation on my bowel. My department have been brilliant at supporting my condition. They got me (and another colleague) a fridge to keep our medication in, I have a new standing desk to help with my chronic fatigue, there are lots of accessible disabled toilets in the building we're in and they let me work from home one day a week. My boss/colleagues are really understanding of my condition".

You can read more personal stories of digestive conditions on the Guts UK website.

 

Rheumatoid Arthritis - Anonymous

"I was diagnosed with Rheumatoid Arthritis in 2002, having worked for the University for 13 years. Swollen, painful joints made it increasingly difficult to work in a laboratory environment and I was fortunate to be able to move to more office based work. I received a workstation assessment from Occupational Health and have since been provided with equipment to help my needs (e.g. an optical trackball, a narrower keyboard and voice activation software). This support from the University has been very helpful and has enabled me to continue working full time".

You can read more personal stories of arthritis on the Arthritis Action website.

 

Endometriosis - Anonymous

"I got diagnosed with endometriosis in 2008 after suffering with many symptoms for years before. It is not something that GP’s were aware of and my symptoms were linked to other conditions such as IBS, anxiety or it’s just what your period is meant to be like.

My symptoms were extreme pain during ovulation, pelvic pain and cramping before and during my period, heavy bleeding whist on my period, also pain during and after sex. It also caused issues with my bladder and bowel.

I started off on the combined contraceptive pill to stop my periods but I was still getting the pain (it’s a myth that even through you’re not having a period you can still get pain). I was fed up of taking strong pain killers and wanted something else done.

A Dr who finally listened to me sent me for various tests Ultrasounds, CT scan and then finally I had a laparoscopy where the surgeon gave me the official diagnosis of endometriosis. Sadly they didn’t take any of the tissue away but it was fantastic to be given a reason for all my years of pain.

I was advised to go on the progesterone only pill as the combined pill contains oestrogen and this can cause more of the endometriosis tissues to grow. For a while it helped and I stayed on this for years.

As I knew I had completed my family, (I have been blessed with 2 beautiful sons – as this condition can cause women fertility issues) I decided that I wanted to look into getting a hysterectomy, at the age of 39 this was not something the consultant was happy with at the age I was. I agreed to try out the Mirena coil to see if this would help – I had to have it removed after 6 weeks as it was causing me so much pain and was also making my depression worse.

The consultant finally decided after I turned 40 that if I was still wanting to have one he would perform a hysterectomy for me. I decided that I would have everything taken out so in November 2014 I had my cervix, womb, fallopian tubes and ovaries. I had to have this performed abdominally as this way they could remove any endometriosis.

I am really glad that I had this done as when I had my follow up appointment with the consultant he told me that my surgery had taken a while and been complicated as he had found a large fibroid, my bladder was stuck to my bowel, there was endometrioses tissue in a lot of my pelvic area and even in the pouch of douglas (which I’d never even heard of). Although my recovery from the operation wasn’t easy and I went straight into surgical menopause it was the best decision I made. I was advised not to take HRT as it may encourage the endometriosis tissue to start to grow again (they can never fully take it all out) and I also have breast cancer in the family.

A hysterectomy is not always the answer but for me I have a better quality of life now, I know that some of the pain has stated to return but this can be managed through normal painkillers. I am treating my menopause symptoms with alternative methods and 5 years on I am a much happier person than I have been years ago.

Through having endometriosis I have found support and friends through social media and been able to raise awareness of this relatively unheard of condition. There has been recently in the news various articles highlighting it and one of my friends was involved in the calendar that was produced to raise awareness to help others. Endometriosis UK (endometriosis-uk.org) helped me out enormously and they have online community and a helpline what you can get in touch, I know that it has and will affect many women (and their families) for years to come – but raising awareness of this awful disease is something I am passionate about"

You can read more personal stories of endometriosis on the Endometriosis UK website.

 

Dyslexia - Olivia Joyce

"It seems that dyslexia is still considered a disability associated with stupidity or lack of intellect. I was diagnosed in France, where I grew up, at the age of 17. Teachers just assumed that I struggled with both English and French and therefore did not pick up on this. I was also asked if I would prefer attending a ‘special school’ once I was diagnosed. I moved over to England to attend University and in 2014 I was awarded a 1st from Coventry University in Animal Science and Welfare. I began lecturing in 2014, I taught post 16 BTEC qualifications and first year veterinary nursing degree students. Throughout this time, I did not mention to my line manager or colleagues that I was dyslexic. I had to learn to hide it very well, dodging minute taking or avoiding reading out loud. I received my Diploma in Teaching and Training from the University of Warwick in 2017 with Outstanding in Teaching, still I felt uncomfortable admitting it to anyone. Once I decided to leave teaching, I started admitting that I was dyslexic (maybe it was because I didn’t care so much anymore), the reaction was not positive. Comments included – ‘how can you be a lecturer and be dyslexic?’, ‘You’re dyslexic but you teach?’. Needless to say these comment made it difficult to ever admit to any other employer that I have a learning disability.

I then started working in admin for an international company in Warwick. During the recruitment process, I was told that this sort of job would not suit someone with dyslexia. This affected my confidence but I persevered and got the job. I then had to start the process of hiding my disability. This was very stressful but I just about managed. I finished my one year maternity cover and then started working at the University of Warwick. I have never admitted on an application that I may need special requirements. I never thought that an employer would allow for extra time for an admin test and if they saw I was dyslexic automatically assume I couldn’t do the job.

Unfortunately, unconscious bias still exists and I wanted any employer to get to know me first before I admitted anything. Basically I wanted them to realise I could do the job regardless.

The Engineering Department at Warwick is the first place I’ve felt comfortable enough to talk about my dyslexia with colleagues and my line manager, and the response has been very positive".

 

Fibromyalgia - Rachel Evans, Teaching Fellow, Warwick Foundation Studies

"Having fibromyalgia feels like my body has been taken away from me, and has been replaced with a totally different one that is constantly in pain and reacts strangely to everything!

I was on my honeymoon in August 2016 and became ill with fever, muscle aches and widespread pain, and I have not got better since.

On returning home I was checked for various tropical diseases, and after many tests, it was determined I had an unknown virus and was suffering post-viral fatigue. A frightening and a frustrating six months later, with a worsening in symptoms, I was diagnosed with fibromyalgia. This is a diagnosis of exclusion – this is the diagnosis you have after repeated blood tests, scans and assessments, and everything else has been ruled out.

My route to diagnosis it turns out, is actually fairly typical. It usually follows a significant event, such as a wedding or the birth of a child, or a traumatic experience, such as a car accident. The medical cause is still not known, but it appears that the nervous system becomes reset or hyper-sensitised, as it registers pain where there is no tissue damage. This does not mean the pain is imaginary – brain scans of people with fibromyalgia have shown a response that is similar to people with fractured bones. However in fibromyalgia, the brain is causing this pain, and not a physical injury.

The effect of this illness was that overnight I changed from an active person to one that struggled with mobility and became limited in everything I do by chronic pain. It feels as if I have flu every day. People don’t believe me when I say that, as if it is not possible to live with flu every day. But that bone-aching tiredness, the extreme sensitivity, the debilitating headaches, and the feeling that you have no idea how you are going to get out of bed or have a shower, as it just seems impossible that you have the energy to move, is how I feel every day. The pain also keeps me awake at night, and so disturbed, limited sleep has unfortunately become normal.

Fibromyalgia is also a condition that likes to embarrass you. Throughout the day I will have moments of high temperatures and sweating, followed by feeling freezing and shivering. I get shooting electrical pains down my arms and legs that can make me suddenly very clumsy and uncoordinated, and I can be extremely sensitive to touch so that a hug can be incredibly painful. Sometimes I have been in so much pain from someone touching me that I am convinced that they have broken a bone. Another exasperating symptom is ‘fibro fog’, where you can become incredibly forgetful. This has caused no end of awkward moments – such as completely forgetting my address when going to vote, being unable to remember my date of birth, and forgetting the alarm code to my house when trying to get back in!

Fibromyalgia has no cure and it is a life-long condition. The only option is to manage it. Pacing is a recommended approach, whereby you intersperse short periods of activity with rest, in order to prevent the ‘pay-back’ from too much exertion (a flare up of pain symptoms). I cope through acting as if I was normal, and planning how I’m going to get through just the next hour. Concentrating on just one hour I find more manageable, rather than a whole day which seems overwhelming. What has helped me most is swimming and hydrotherapy sessions with a physiotherapist and a group of fellow chronic pain sufferers. These have shown me that my body is still capable of some things. During lockdown, being without these has been akin to suddenly stopping a successful medicine, and I have been left feeling unable to manage the spikes in pain.

Fibromyalgia forces you to take life at a slower pace, which 4 years on, is still difficult accept.

More information on fibromyalgia can be found here."

 

Multiple Sclerosis - Dr Jane Andrews

"I am an academic member of staff employed in WMG. I have Multiple Sclerosis. As a result of this I live with a number of physical and other impairments including pain, fatigue, mobility problems, difficulties with vision and speech. I use a mobility scooter and a rollator to help me get around. It's probably fair to say that I am amongst the 'most' physically disabled colleagues within the University.

I arrived at Warwick early in 2019 having experienced some significant disability discrimination at a different institution. As a consequence of this I was not in a good place mentally and was very reluctant to ask for any adaptations, or even to discuss, my disability. I needn't have been concerned.

I have found WMG in particular to be very forward thinking when it comes to accommodating my disability and providing support so that I can make sure I contribute fully. For example, my disability related needs were taken into consideration in the allocation of office space for my whole team - we are now on the ground floor, with an accessible toilet (very important when you have MS) nearby. Furthermore, I have had two different line managers since my appointment at WMG. Both have been extremely supportive. Helping me to work out how best to manage my workload so that the M.S. doesn't get in the way.

As the Pandemic struck it became obvious that it would be dangerous for me to return to campus before any vaccination programme was in place. This wasn't a problem and I have been fully supported in working from home.

Professionally I have been given the opportunity to continue to make a difference doing what I love. I have recently been promoted and am so amazed to be in a place that values me as an academic and professional person - irrespective of the fact that I have M.S.

WMG is making a real effort to become a fully inclusive learning community. This is being done in a culture where difference is acknowledge and viewed as a strength. Likewise, I have joined the University of Warwick Staff Disability Network and have found myself part of an educational culture where it is ability not disability that counts. I would encourage any disabled colleagues considering applying for a position here at Warwick to apply."

You can read more stories of life with MS on the MS Trust website.

Photo by Marcus Aurelius from Pexels. Colour filter added to original.

You may also be interested in:

ED&I Newsletter

Support, initiatives, and guidance relating to disability

Disability Framework (workplace adjustments)

Taskforces and SIC - including Disability Taskforce

Policies - including Disability and Mental Health Policy

Initiatives - including our booklet 'The Most Important Things People Want You To Know About Disability & Caring'

Training and Learning

Charters - including Disability Standard