From 16 November to 16 December we have been celebrating the first ever Disability History Month at ELHT, looking at different aspects of disability and introducing our Disability and Wellness (DAWN) staff network for colleagues.

As part of the month we've spoken to Thomas, a member of our ELHT Family, who has opened up about his disability and how it affects his day-to-day life.

Tell us about your condition

I have Ulcerative Colitis (UC), an inflammation of the lower end of your digestive system and was diagnosed in 2009 after a little over 6 months of declining health.  I initially thought that I would be okay as long as it was not Crohns disease but sadly, this is not the case.


How does it impact your life?

The impact of UC is wide reaching and has changed almost every aspect of my life.  I used to travel a lot, going out to gigs and being very active with sports, gym and hiking.  But now, I get a lot of anxiety about leaving the house and if I do, I do a fair amount of research about the journey I am doing e.g., where the toilets are, what the route looks like and where I can go to the toilet if I must.  Whenever I do go out, I do not have the energy to do as much as I previously did, and I have to adapt how I do things.  For instance, I find the high bass at gigs can disturb my stomach which leads me to standing further away and it's constant and little behavioural changes I have made to try and maintain my lifestyle as it was.


As I am usually uncomfortable in my gut all day  it becomes tiring to get through a day outside of my comfort zone, but I refuse to let UC take full control of my life.  During flares, it can lead to internal bleeding, and this can lead to extra anxiety about the matter.  However, I am fortunate that this is a rare occurrence for me so far in my journey.


The common symptoms of UC are diarrhoea, internal bleeding, stomach aches and a feeling of urgent need to go to the toilet.  I am a member of a UK Facebook UC page, and a number of members discuss the increased level of fatigue and suffering common side effects from the medication. 


What support have you received from ELHT?

I joined ELHT having already had a diagnosis and 9 years of living with the conditions.  I had my control measures and medication pathway in place.  My initial years were fine and were like the preceding years, with ups and downs, good days and bad days, and homeworking was not part of the wider NHS culture at the time.  Managers and colleagues in my initial role were as supporting as I expected or required, as sadly, there is not much that can be done as I have to manage the condition and understanding for UC is rare and I believe it is hard for people to truly understand the everyday problems it causes.  A common response I get is "there are toilets in work" whenever I explain that I am having a tough day etc and I think I understand their thought process, but it is far removed from a simple reality for UC suffers.  


How are things now?

During the Covid-19 pandemic I was eventually allowed to work from home and I found this to be incredible for my physical and mental health.  Removing the pressures of having to leave the house, worry about access to toilets in the workplace and the condition of those toilets, and the removal of any fear of traffic, meant that I had a massive reduction in the number of times I went to the toilet, and there was a reduction in my pain and fatigue levels.


What would you say to other people thinking of working for the Trust or your team who have a similar condition?

Why someone wants to work for the NHS, how someone presents with UC, their personal circumstances, the culture, and support from an individual manager differs. I would just explain all the difficulties that I have faced and allow them to make their own decision.