After the announcement from Boris Johnson; pubs, restaurants, hair salons and entertainment facilities were set to reopen from 4th July. Whilst the anticipation is now over, the eager public can now reclaim partial freedom by acquiring that desired fresh pint enjoyed with friends, and getting that well needed haircut. As the lockdown restrictions are starting to ease, it gives the impression that a new sense of normality is in close proximity and this pandemic may all be a distant nightmare.
That cannot be said for those suffering with debilitating illnesses, such as Cystic Fibrosis (CF), Multiple Sclerosis (MS) and Myalgic Encephalomyelitis (ME). ME, also known as Chronic Fatigue Syndrome (CFS), is estimated to affect 1 in 250 people in the UK. The condition includes symptoms of extreme fatigue, muscle/joint pain and ‘brain fog’ which is not relieved by sleep. The severity of the symptoms can vary from person to person, but for all, their lives have been changed. For severe ME sufferers, getting out of bed or retrieving food from the fridge is a constant battle, and in extreme cases some are confined to the perimeter of their beds.
For decades, doctors could not comprehend there was anything wrong, as patient’s vitals would not show abnormalities so there has been minimal awareness for this invisible condition. It was Sigmund Freud who classed these indescribable conditions as hysteria, therefore, it was assumed it was a psychological issue and historically the patients were sent to asylum facilities. Doctors still consider Freud’s ideology, however it is now known as ‘conversions disorder’, and this is where the misconceptions of the disease take place. The condition has been viewed as a joke, where Ricky Gervais portrays it as just laziness saying, “I don’t feel like going into work today”.
For that reason, when American Ph.D. student Jennifer Brea became struck down with this illness, she decided to document her journey, hoping to educate people and find a cure. Brea’s determination was rewarded as the film ‘UNREST’ achieved five awards, which led to a new development. Brea launched the organisation ‘#MILLIONS MISSING’ to build a global movement to fight recognition and research, and to channel attention to all the forgotten people and make them visible again.
Being forgotten often causes sufferers to feel lonely. If sufferers are unable to attend social activities, they may just get left behind, albeit unintentially. For many, going to work provides vital human connection which sufferers are unable to obtain. So, through this COVID confinement, no interaction has been possible, and therefore a newfound virtual platform has been formed. Now people may reach out to sufferers to reconnect old friendships as their lives have been halted too. However, will this lockdown virtual community continue to extend, or will it all be forgotten through selfishness or neglect once this is pandemic is over? Only time will tell.
One thing I do hope will change is the understanding of CFS in the workplace. From experience, I have been through unfair dismissal due to the onset of CFS, and millions of others have dealt with similar situations. Employers may discriminate against people who are unable to work full time in comparison to able workers. However, now that working from home has become a reality, showing its feasibility, could people with debilitating illnesses be able to work again? Will some new flexibility in the workplace appear after the pandemic is over? For ME sufferers, this pandemic could present the opportunity to work again from the comfort of their beds. It could bring fulfilment back into their deprived lives.
Sufferers feel trapped in their bodies; their minds wanting to do one thing and the body not responding. Missing out on the simplest things is a daily mental distress, where for many it is taken for granted. Now that the world has joined this lockdown state, will there be a new empathetic understanding? Although the undeniable damage of this COVID period is evident, it has given the world a glimpse of what their restricted lives are like, without the added pain of the condition. So once this pandemic is all a distant nightmare, I do hope invisible illnesses like ME/CFS will not all be forgotten, and some flexibility will be implemented.
Understand ME/CFS more here: