Myalgic encephalomyelitis (ME) is a long term illness with a wide range of symptoms, the most common of which is extreme tiredness. It is a condition that can affect anyone but presents mostly in women ranging from their mid 20s to 40s. Although there is no direct known cause for ME, it can be genetic as well as have different triggers such as hormone inbalance and viral infections.
ME affects an estimated 250,000 people in the UK and 17 million worldwide. The severity of ME can range from mild to severe, with those who experience severe ME requiring continuous care. Not everyone with ME experience the same symptoms. Similarly with other chronic illnesses, people living with ME may recover fully and go onto happy fulfilling lives whilst others may remain ill for a number of years and not fully recover, so it is important to not compare the lives of people with ME.
I have spoken to Bournemouth University student, Ella, who was diagnosed with ME in her early twenties to talk about her own personal experience of living with ME. It took Ella over two and a half years to receive a diagnosis from her doctors and had to undergo a series of tests to rule out all other possible explanations of her symptoms.
being a young person with ME, how has it impacted your day to day life?
I did performing arts my whole life, I exercised and danced five days a week. I had to give this up when I first started experiencing symtoms of ME. The fatigue and fainting spells put me off any type of physical activity because I couldn’t bare the pain it caused me. Because of this I am unable to do things a normal 22 year old would do. I can’t plan events because I have to take each day as it comes in order to prioritise my health, this then stops me having a routine as today isn’t the same as yesterday. Drinking, dancing and being out for long periods of times drains the energy from me.
hOW HAS LIVING WITH me IMPACTED YOUR PERSONAL RELATIONSHIPS WITH FRIENDS, FAMILY AND PARTNERS?
As I can’t really plan in advance it does create a strain when trying to organise time with friends and family. It brings me a lot of guilt if I have to cancel on the day to something that has been planned in advance because my ME is bad. I have put a lot of focus into surrounding myself with people who care for me because people with any disability shouldn’t feel guilty for prioritising their health and that is what those around me have taught me. I am lucky that my friends and family will do what it takes to still spend that quality time with me. Its learning to adapt and change your surroundings to help you, not the other way around!
do you think living with ME has made your university experience different to those without a disability?
1000%. I’m unable to drive during bad episodes which creates issues in getting to university in the first place. With ME, there are no ‘set’ symptoms that everyone with the condition will have. Some experience more symptoms than others. Unfortunately one of mine is fainting which I can’t predict when that will happen so this creates a lot of anxiety, especially if I was to go into a lecture room filled with individuals I don’t know. During lockdown it was actually an easier experience for me because everything was recorded meaning I could study on my own personal timetable. With restrictions no longer in place and in person learning resuming, I feel as though I am missing out on the quality of content that everyone else on my course is experience. My university only provide recorded lectures, not seminars, so I miss the thorough detail the other students receive if I am unable to attend.
Living with a hidden disability is still a largely unspoken issue, why you think that is and what do you think needs to change so that younger people with hidden disabilities feel more recognised?
People with ME in particular can experience flare ups. Some days, weeks or months I can almost be bed bound but on the other hand I can have really good times where I am able to go out for meals and socialise. I think people struggle to understand that just because I am disabled, it doesn’t mean that I can’t have those good days. Also, because ME is still a largely under-researched condition, some don’t recognise that you only see people with ME on their good days because on their bad days they are isolated at home. I once had an experience in a car park where I was shouted at for parking in the disabled bay despite having a blue badge and being entitled to park there. Just because myself or other individuals with hidden disabilities are not in a wheelchair, does not mean we are not disabled. People need to stop judging on that. I am quite a confident person, but if I wasn’t or that person shouted at someone else it could of really torn at someones self-esteem and amplified that guilt people with hidden disabilities experience.
Just like any disability, hidden or not, people with ME should be able to continue with their lives without the guilt and worry of outside prejudice. If you are someone who lives with ME or you know someone who does and want to receive and offer more support, The ME association and Action for me are two great charity organisations that provide lots of information surrounding ME and how to receive extra support.