Out of sight, not out of mind

Studying for a degree is difficult enough without the added barriers of a long-term illness and the problems such conditions present. But when that illness is an invisible one, it can make getting the support and understanding necessary to achieve your potential even tougher.

I came to Warwick in the middle of a long and drawn-out diagnostic process for Chronic Fatigue Syndrome, also referred to as Myalgic Encephalomyelitis, and two years later it’s still ongoing. I’m lucky that I have an incredibly supportive group of friends and family who understand how my illness affects me, but I still face a lot of judgement from others who have never heard of my condition or don’t take it seriously.

But to those who don’t know about my illness, I can come across as a student who has likely had one too many late nights…

CFS/ME presents itself as a debilitating fatigue which becomes worse upon physical and mental exertion. This leaves me overwhelmingly tired, along with constant joint pain, difficulty concentrating, and an inability to process situations involving intense light, noise, or interaction. But to those who don’t know about my illness, I can come across as a student who has likely had one too many late nights, or is simply a little bit lazy.

I don’t blame those who don’t understand. Until three years ago, I’d never heard of CFS/ME either, and if I saw someone yawning their way through a seminar I would probably have joked that they should have gone to bed earlier too. But when you hear that remark nearly every day, it’s not quite so funny anymore. I don’t expect everyone to have a medical degree and a complete understanding of every invisible illness in existence- it’s okay to be unaware of these things. What isn’t okay is to choose to remain ignorant. If you know someone living with an invisible illness, and you want to help, all it takes is a willingness to understand and to adapt. Ask them if there’s anything you should know, or simply do a quick internet search to get a bit more information.

I spend much of my free time curled up in bed, trying to move as little as possible…

Having an invisible illness affects every aspect of my life – academically, socially, and emotionally – but other than the frequently drained expression, you can’t tell that just from looking at me. It’s easy to assume that someone is okay when you don’t know what happens behind closed doors. I attend all my contact hours where possible, I’m President of a society, and I have a part-time job. I refuse to give up those things, but the price is that I spend much of my free time curled up in bed, trying to move as little as possible. I’m lucky that I live with my partner, and that he’s willing to help me get through each day by doing far more than his fair share of the cooking and cleaning, but a lot of people don’t have that option.

Warwick’s Disability Services are brilliant at helping students who have diagnosed conditions, as there is an entire range of measures which can be put into place to combat the disadvantages posed by a long-term illness. For some, however, it isn’t that easy. The nature of many invisible illnesses means that they can take an extremely long time to officially diagnose, with a lengthy process of appointments and tests to go through first before such help is possible. In this case, even securing extensions for assessed work can be a painful process. For instance, last year when I was going through a particularly bad few weeks – even with the full support of my personal tutor – I had to fight to be granted extensions on the grounds that I should have been more prepared for such a possibility: a judgement that was not only unfair, but extremely distressing.

I had to fight to be granted extensions on the grounds that I should have been more prepared for such a possibility…

Whilst awareness of invisible illnesses is slowly increasing, it’s evident that many people still aren’t aware of their existence or how serious they can be. Without that basic understanding, it’s impossible to comprehend how greatly they can affect every aspect of someone’s life. My friends don’t take offence if I have to back out from plans last minute, because they know it’s a choice I have to make rather than one I want to.

However, sometimes it still takes a lot of courage for me to admit when I’m not okay, so I’m always grateful when someone is willing to understand; when they choose to see beyond what is obvious, and comprehend that just because something is ‘invisible’, it doesn’t mean it’s not there.