10 May 2011
Angela Culpin asks, what about ME?
Unless you, or someone you know, experiences myalgic encephalopathy/ chronic fatigue syndrome (ME/CFS) then the chances of you knowing that Thursday, 12 May is International ME/CFS Awareness Day are unlikely.
For many people, discovering they have ME/CFS can leave them feeling like their lives have been turned upside-down. I know this because I am someone who experiences ME/CFS.
The history behind this illness is intriguing to say the least. ME/CFS is known as an invisible illness because people often look perfectly healthy. However, it is a complex and debilitating neurological disease that effects the immune, endocrine, cardiovascular, autonomic and central nervous systems.
Due to this complexity, there is much debate around the cause and possible treatment of what some medical professionals have deemed a ‘low status’ illness. What’s more, some within the medical field have questioned the actual existence of ME/CFS, which can mean that people are not taken seriously by friends, family or even, in some cases, their GP.
Before I became ill, my identity was linked to the work I did, my social life and the range of activities I regularly took part in. Like many people who experience chronic illness, I found that I could no longer take part in these things, and I struggled to see the meaning and purpose in my life, but I was determined not to have my illness define who I was. It is just a small a part of me, not who I am.
Studies have shown that this disruption in identity, that sense of self, knowing who you are, is very common. However, it’s not all bad. It can also bring with it some positive changes because the experiences you have as the result of this condition bring new insights.
Life evaluation and changes to my way of life
Moving from an identity associated with lots of activity to one coupled with inactivity provided me with the time to reflect upon my relationships with others, my obligations and my priorities and, as it often does, this ‘space for thought’ led me to a revaluate and make some changes to my way of life.
It took me a long time, but I came to realise that needing to take a slower pace in life does not make me any less of a person. A good life is not always about being busy and being a ‘high achiever’. There is merit in taking things slowly and reflecting and, in fact, one of the five ways to wellbeing is ‘take notice’ and calls upon us to slow down and be aware of the present moment. Savouring an experience has been shown to enhance wellbeing and reinstate life priorities.
It’s important that people who are experiencing illness know they are still valued, and that acknowledging that the smaller things in life can bring joy. I think this point is relevant not just to those who experience illness but many people with busy lifestyles that are so common in our modern world.
Despite its prevalence and severity, ME/CFS has the least research funding attributed to it and this is crucial in the search for treatment. There is also a need for an increased knowledge not only for health professionals but also the public. So please join me on Thursday, 12 May and wear a blue ribbon to in support of ME/CFS Awareness Day.
Angela Culpin, Youth Mental Health Promoter, Mental Health Foundation
