The Disability and Inclusion Network at the University is committed to supporting all staff with disabilities at work across both campuses, and those who care for other people with a disability.  

Members from the Network have shared their personal experiences of living with different visible and invisible disabilities below, each offering a unique perspective into their feelings and the way they manage it in day-to-day life.  

This blog intends to raise awareness of different conditions you may or may not know about, to reduce stigma, and to help colleagues be more mindful of what others may be going through.   

Arthritis 

Arthritis is a condition that can cause symptoms such as joint pain, swelling and stiffness. There are different types of arthritis, and it can affect people of all ages. Whilst there is no cure for arthritis, treatment can help to manage the symptoms.  

“It’s like having toothache in your joints. No- can see if you have toothache. Some days are bad, others are fine, but you just fight through the bad days. You realise that some days, it just takes longer to get up and working.” 

ADHD  

Attention deficit hyperactive disorder (ADHD) is a neurological condition that affects a person’s ability to focus and control themselves. Symptoms can include hyperactivity and impulsiveness, as well as difficulty concentrating. ADHD is often diagnosed in childhood, but for many it can be undiagnosed when symptoms seem less obvious.  

“ADHD to me is like having 15 emails open, 30 unfinished books on my kindle but knowing I could go back into them at any time and carry on reading. Hyper focusing on a new Netflix series or book series until I have watched/read everyone available and then feeling lost when I have finished them.  Its craving routine but then wanting excitement and a challenge.” 

“Having ADHD means that you lack the social filters that neurotypical people enjoy. Every unread or poorly structured email in your inbox and every undisciplined meeting makes you shrink inside because it’s like a noisy room full of people screaming for attention; where every voice needs to be given full attention because it might, possibly, be something important.” 

“It’s like having a head full of crickets, each singing a different song, but you can’t pick out just one song…” 

Fibromyalgia 

Fibromyalgia causes pain and tenderness across the body, resulting in symptoms such as fatigue, joint stiffness, headaches, depression, tenderness, numbness or tingling, increased sensitivity to light and noise. It is a long-term condition which means symptoms can suddenly get better or worse. There’s no cure for Fibromyalgia, but treatments can make the symptoms easier to live with.  

“I look fine, smile almost always in place, but I live in constant pain. I’m fatigued. Not just tired, but exhausted. Balancing work, life, rest, appointments, medication, is wearying, and using annual leave to rest is essential, but really sad. I miss my energy.” 

Generalised Anxiety Disorder (GAD)  

GAD is a mental health condition which causes an individual to experience anxiety about lots of things. As a result, individuals can feel restless, have difficulty sleeping, feel lightheaded or dizzy, experience stomach problems, and be more likely to experience low mood or depression. GAD is a common condition, and treatment can range from talking therapies to medication.  

“The thing about an anxiety disorder flare-up is you don’t always realise it’s taken hold until it’s too late. When the spiral hits, you’re already sinking. It makes you live on your guard not just for external threats, but for anxiety itself every minute of every day. It’s exhausting.” 

Colitis 

Colitis is a long-term condition causing inflammation of the colon and rectum. The main symptoms are stomach pain, recurring diarrhoea, and the need to go to the toilet frequently. This can cause extreme weight loss, fatigue and loss of appetite. Colitis flare-ups can occur for individuals with the condition, which can cause further symptoms. Medicine can treat the condition, but in more severe cases surgery may be considered.  

“I do not have the vocabulary to explain how I am to my IBD nurse. I eventually resort to language used by children to explain the issues for fear of appearing coarse or rude. It’s hidden and not discussed in open conversation. Sometimes it can be very debilitating and embarrassing and it’s always at the back of my mind when planning anything.” 

Autism 

A neurological condition where the brain works in a different way to those who do not have autism. Autism is a spectrum, meaning those with the condition all have very different experiences. Symptoms can include finding it hard to communicate with others; difficult understanding how others think and feel; and finding situations or certain external factors like light and noise overwhelming and stressful.  

“It can feel like every day is your first day. Sometimes, I ask myself if everyone else has been given a handbook on how to be a human and I’ve been missed out.” 

Type 1 Diabetes 

Type 1 Diabetes is an autoimmune condition where the body cannot make a hormone called insulin, which helps your body to use glucose (eg sugar) for energy. Type 1 diabetics need to take insulin every day to manage their blood glucose levels. There is no cure and people can be diagnosed at any age, although it’s more likely to start during childhood.  

“It means you are constantly fighting to maintain good blood sugar levels.  Too low and you risk hypo’s where you can easily go unconscious.  Your brain activity, ability to focus and speech is all affected. Too high and you feel tired, nauseous, aching joints and eyes. You have to remember to always keep food and insulin injections with you, wherever you go.” 

Cancer 

Cancer is a condition where cells from a part of the body grow and reproduce uncontrollably and can invade nearby healthy tissue such as organs. It is believed that 1 in 2 people will develop some form of cancer during their lifetime, with the four most common types of cancer in the UK being bowel cancer, breast cancer, prostate cancer and lung cancer. Treatments for cancers can vary and can include surgery, chemotherapy and radiotherapy.  

“A cancer diagnosis stops everything in its tracks. And it throws you into a world of paradoxes: you (might) feel healthy but you’re not; you are strong but you’re vulnerable and wobble; everyone around you wants to help and support you but you feel alone.” 

Epilepsy 

Affecting the brain, Epilepsy causes frequent seizures which can cause other symptoms to occur. It can start at any age and is lifelong. Treatment options can include medicine, surgery, and diet management.  

“People have a very narrow view of what this is – unconscious seizures. What it actually is – tiredness, sensory overload, no driving license, seizures no one can see, brain altering medication, but also, the love of family and friends, supportive colleagues, learning self-care and prioritising your wellbeing.” 

PTSD 

Post-traumatic stress disorder (PTSD) can occur following a particularly distressing and/or frightening event. Symptoms such as flashbacks, insomnia, and nightmares can all play a significant impact on an individual’s day-to-day life. It can occur immediately after an event or a week, months or even years later. PTSD can be treated, dependent on the severity of symptoms.  

“It affects your sleep (nightmares), your perceptions of reality (flashbacks), everyday activities you no longer can or want to perform (avoidance), your social interactions (disconnection), your thinking patterns (brain freeze), and pretty much your whole identity.” 

Support 

• Any staff members who have or are affected by physical or invisible disabilities are welcome to join the Disability and Inclusion Network. Find out more about the Network on their dedicated webpages.  

• The University has a range of support services available for staff, including the Employee Assistance Programme, opportunities to get involved in sport and physical activity, as well as policies to support a work/life balance. Discover the staff wellbeing offering available at Loughborough. 

• If you want to learn more about living with a disability or neurological condition, many colleagues have previously shared in-depth personal experiences of living with or caring for someone with a disability or neurodiverse condition on the EDI blog