I was a healthy 28-year-old, having her fourth child. My previous pregnancies were like a piece of cake compared to this last one. I remember waking up one day in my second trimester and not being able to move or talk. I immediately got to A & E and was told I had Pneumonia. A week later I was back again – officially diagnosed with Lupus SLE. An autoimmune condition that affects some of the internal organs of my body and joints.
The body assumes that there are foreign bodies within it and produces higher levels of white blood cells to try to combat the assumed bacteria. As the body doesn’t know how to function with this excessive action, it then breaks out in the form of inflammation. It’s an illness that doesn’t allow you to take life for granted. From this day I literally take each day as it comes. The confusing thing is, I look perfectly healthy, but most times feel like I’ve been run over by a truck. The invisibility of this illness has caused many non-Lupus SLE individuals within my social network also feeling confused and at times in disbelief.
There is no cure for Lupus however it can be successfully managed through medication. Despite this I still experience flare ups. I experience minimum three relapses a year since contracting the illness in June 2013. Relapses can last anything from 24 hours to 6 months, however the symptoms are always present.
Because this condition affects my day to day living, it is classed as a disability, therefore my employer was able to set up reasonable adjustments for me such as working from home, providing me with an ergonomic chair and moving table, ergonomic keyboard and mouse, regular break intervals, reducing my hours and disability leave.
My Managers used their initiative by trying to understand the illness by reading information leaflets and showing greater understanding and empathy towards me. Lupus is a misunderstood illness and it can take a significant amount of time before it it is even diagnosed, therefore the greater support, the longer the lupus sufferer can remain in employment. Through these reasonable adjustments I was able to sustain my employment part time and have a well- balanced lifestyle.
Employers can be proactive in supporting employees by doing the following:
Reading up to date publications of Lupus SLE.
Change/reduce working hours.
Extended absence (Disability absence).
Reassess the employees working environment.
Train other colleagues so that they are aware.
Engage in more effective communication
Put in reasonable adjustments such as an Ergonomic chair, Keyboard or mouse.
Access to work.
Visits to occupational health/physiotherapists.
Useful websites
www.equalityhumanrights.com
www.equalityadvisoryservice.com
www.lupusuk.org.uk
www.fitforwork.org/employee
www.disabilityrightsuk.org
www.nhs.uk/lupus
www.hibbslupustrust.org
