Living with an invisible condition
You might not realise it, but your fellow colleague, friend, or family member could be living with an invisible condition.
Invisible illnesses are not usually life-threatening; however, they can significantly affect someone’s day-to-day life. Examples of such conditions include sickle cell anaemia, lupus, depression, or obsessive-compulsive disorder (OCD).
A member of the University’s Inclusivity Group has anonymously shared their experience of living with ulcerative colitis below to raise awareness of the condition and to make colleagues aware of the invisible conditions, illnesses, and disabilities other staff may be facing each day.
I was diagnosed with Ulcerative Colitis in May 2018, an auto-immune condition for which no one knows the cause or the cure. I’ve had some of the worst times of my life with this disease.
It’s one of the two main forms of Inflammatory Bowel Disease (IBD) and causes inflammation and ulceration of the inner lining of the colon and rectum. People often confuse this disease with IBS (Irritable Bowel Syndrome), which can lead to inaccurate presumptions. The two can be similar in terms of the level of debilitation, however IBD causes inflammation, increases the risk of cancer, and sometimes requires hospitalisation or surgery.
When my condition is at its very worst I lose control of bowel movements, usually about four hours after eating. As the food passes through the digestive system my body can’t cope with holding it in; sometimes even water upsets it. This means my body is not absorbing the vitamins and nutrients it needs, and I can lose a lot of weight very quickly, which then has a knock-on effect. It leaves you feeling weak and lifeless and, if the bathroom is quite far away, it can also leave you feeling very embarrassed. My colitis seems to flare up between two to four times a year, and it’s unpredictable as to when this might happen.
Working from home has massively helped me because I’m not rushing around in the mornings or battling the everyday anxiety of rush hour traffic. I can start work straight away at the beginning of the day and take short breaks if I feel weak. Even when my stomach is not ‘behaving itself’ whilst I’m at home, I’m still able to work a full day because I can locate myself next to the bathroom (whereas before, there were occasions where I may have had to call in sick when experiencing a flare up, for fear of being too far away from the bathroom).
Because everyone is different, it can be very trial and error in terms of prescribing medication to treat ulcerative colitis and it can take years to find a medication that works.
There is currently no cure. I’ve tried three different types of medication so far, all of which have actually irritated the disease and caused symptoms to flare up, so I’m currently not taking any medication. This means the risk of experiencing a future flare up is always around the corner.
Over the last three years I’ve worked out which foods I need to avoid to prevent a flare up, however stress or exhaustion can also trigger them. My specialist reminds me at every appointment that, by not being on medication, I’m increasing my risk of bowel cancer, but the next recommended medication I would be prescribed actually supresses the immune system (not ideal during a global pandemic), and comes with its own possible side effects such as hair loss and an increased risk of skin cancer.
I have found the University’s Staff Inclusivity Group to be a great support. We all have different debilitating situations but the members are very proactive about raising awareness of invisible illnesses, conditions, and disabilities, and about making positive changes in the workplace to improve things for everyone.
It’s also good to talk to others who have perhaps experienced misconceptions about their disability and feel like we’re not alone. One of the things I struggle most with is the ‘opposite extremes’ nature of my condition, for example when my condition is not flaring up I feel pretty much back to normal, whereas when it’s at its worst I’m too weak to get out of bed. This made it sometimes feel strange, or wrong even, to attend an Inclusivity Group meeting (where some members have to deal with a permanent disability), however being able to talk about this has helped me to realise it is part of my life, and it’s okay to ask for support when I need it, and I’ve realised that when I’m feeling well I can be a support to others. I wonder if there are other colleagues who feel like this, who might really benefit from joining the group for extra support when they need it most.
If you have been considering joining the group, come along to a session and see how you feel. You’ve nothing to lose.
For further information about the Staff Inclusivity Group, please contact Emma Nadin at firstname.lastname@example.org. Those living with or affected by physical or invisible disabilities are all welcome.
Employees living with an invisible condition that affects their work can also contact the University’s Occupational Health team for additional support. More information about the support they can offer is available here.
Equality, Diversity and Inclusion
Reflections, comments, discussion and opinion on EDI topics from Loughborough University staff and students