Assistant Practitioner Sharon shines a light on invisible disabilities
This International Day of People with Disabilities (IDPWD) brings focus to disabilities that are not immediately apparent, such as mental illness, chronic pain, sight or hearing impairments and learning differences, among a long list of others.
Today, as a reminder of the importance of removing barriers for millions of people living with a disability, both visible and invisible, we spoke to Assistant Practitioner, Sharon, about her experience living with an invisible disability.
Sharon talks us through her experience from diagnosis, treatment and the impact it has had on her life, to how she is now representing our disabled staff at UHDB.
Embracing my 'new normal'
Working double shifts, seven days a week as a Domiciliary Carer, I would often feel tired but thought nothing of it; of course I was feeling tired working such long days! I then started to feel sick and didn’t look particularly well, but passed it off as the start of the menopause – I was in my mid-forties.
After a week of these symptoms I developed a sore throat and went to see my GP who prescribed antibiotics, and later, a trip to A&E where I was prescribed more antibiotics. By this point I looked extremely pale, was frequently out of breath doing the simplest of things and ended up in the Medical Assessment Unit. I was seen by a Haematologist, who diagnosed me with Acute Myeloid Leukaemia (AML), of which I had a 50/50 chance of surviving.
Treatment began immediately to give me my best chance. It involved long periods in hospital, over six months, with chemotherapy that destroyed my immune system. I experienced terrible pain as a side effect of chemotherapy and started losing those around me who were also receiving treatment for AML.
Fortunately I went on to have a successful stem cell transplant and after a few months of anti-rejection medication and frequent trips to hospital I began to feel better, but not ‘normal’.
I was warned of chemo fatigue; I would load the washing machine and then have to lie down for an hour of deep sleep. I also had to have all of my childhood vaccinations again to rebuild my immune system, as well as an antibiotic to take for life, due to my spleen being affected.
I went back to work at Royal Derby Hospital on the Oncology Ward just nine months after my diagnosis and treatment. As I couldn’t work anywhere with a risk of infection, the Oncology Ward was a safe place for me to be, I also related to my patients in the darkest of moments, and could provide that compassion and care I knew would be needed.
Unfortunately chemo fatigue affected my stamina and eventually my job, leading to me reducing my hours. I was trying to resist my ‘new normal’ rather than embracing it, and my body couldn’t cope.
I was later diagnosed with Hashimoto’s Thyroiditis, an auto immune disease, caused by my chemotherapy treatment. It causes your body to swap between underactive thyroid symptoms like, low body temperature, widespread muscle pain and swelling in your throat, among others. It can then change to overactive symptoms like feeling hot, having palpitations, feeling agitated and more. Overactive thyroid disease, also known as Graves Disease, is an invisible disability.
It makes you feel incredibly unwell, unable to function, yet it isn’t always visibly apparent. There are lots of invisible disabilities and with that, a lot of ignorance, misinformation and prejudice towards people whose disabilities aren’t visible.
My health problems continued, and lead to additional diagnoses such as asthma, thyroid eye disease, moderate deafness and other disabilities, most of which are invisible. Endless treatments and numerous conditions had a big impact on my mental wellbeing. I felt like I was letting my colleagues down by frequently calling in sick, which lead me to feeling isolated and miserable.
After eight years of pain, sickness, treatments and medication, I was prescribed a long-term antibiotic that turned my life around. I no longer caught colds and was able to control my asthma. I could do the things I once enjoyed, like swimming and socialising with friends.
Despite the fact that I now use a walking aid, on the outside I look fit and well. I’m finally embracing my ‘new normal’ and have learnt to say no if I can’t do something, setting my own pace and not feeling the need to keep up with others.
I have faced discrimination both in the workplace and outside, and continue to learn and represent our disabled staff at UHDB through our Disability Employee Staff Support Network, as their Chair and as their voice at UHDB.
I am passionate about making sure our voices are heard and that our workplace actively encourages disabled staff to progress their careers, speak out, educate and be inclusive of their disabled colleagues. I am looking forward to being part of the continued work to enhance Equality, Diversity and Inclusion at UHDB.