My name is Shelley, I am 28 years old and have been diagnosed with ME/CFS since the age of 17, following many years of complex unexplained health concerns and battles with the medical profession.  At 21 I was also diagnosed with Ehlers-Danlos Syndrome.

Despite these years of difficulty, I have focused all my available energy on my studies, obtaining a Bachelors degree in Cognitive Science, a Graduate Diploma in Psychology and a Masters degree in Health Psychology.  Throughout these courses my area of specialism has always been ME/CFS, undertaking research projects (unpublished) in cognitive functioning in ME/CFS, social construction of ME/CFS and how experiences help with coping with ME/CFS.  Somehow along the way I have also managed to acquire a son, a daily challenge to my energy levels!  Upon completing my Masters degree I began working for the National Health Service.  Unfortunately my job has little to do with ME/CFS, invisible illness, health promotion or health inequalities for now, although I always aim to raise awareness whenever I can within my work environment.

The main issue arising from my two qualitative studies on social construction and coping was the need for an arena for sufferers to come together  and actively discuss their experiences.  Online fora often focus more on the social needs of people with invisible conditions, facilitating relationships which would otherwise be impossible for those who are unable to leave their beds and homes to socialise.  This cannot be dismissed as it is an essential service for those people.  However, there are people out there who would like to engage in more discussion.  Too often these fora rely on the courage of the users to request information pertaining to a specific symptom or concern, rather than creating a resource of shared experience where people don’t need to ask the question in the first place.

This is the aim of Visible Invisibility – to be a resource of shared experiences compiled by people with invisible illnesses, for people with invisible illnesses.  A question I ponder is is invisible illness invisible in a purely physical sense?  We don’t have the obvious symptoms of some other, more obvious conditions, that much is well known.  But we are also invisible in a social sense.  In my own case, what many people know of ME/CFS is of those bedridden in darkened rooms, but how many people have ever met someone who is that way affected?  Chances are very few, unless they happen to be a family member, close friend or carer.  These people with ME/CFS are therefore largely invisible – they are the article in the newspaper or magazine, or on the news during ME awareness week.  At any other time they can be pushed out of the minds of people which are already too crowded with all the other things we’re supposed to care about.   And what of the other end of the scale?  What about those who are more mildly affected and struggle to keep what normalcy they have in their lives – a job, a family, friends?  How many of these people do not talk about their struggles to people, do not ask for a seat on the bus, do not say why they don’t feel like going out tonight because of the questions that will be asked, the pity that will be given, the hostility that they ‘aren’t like the ones in the magazines’?  Choosing to remain invisible because it would just take too much precious energy to explain and justify themselves.  This could be applied to any number of invisible conditions, I am sure.

I have been pontificating about starting this blog for some 3 years now, unfortunately life and symptoms frequently hindering me from sitting down and writing.  But a series of events kept reminding me of my goal – to promote an awareness of ME/CFS, EDS and other invisible conditions 24/7/365, and to create a comprehensive resource, compiled by as many sufferers as are able and willing to contribute.

I don’t want this to be yet another site that tells you what you should be feeling, what symptoms should be experienced.  This is an interactive project, which will hopefully grow over time.  I want you to tell the world what you experience, what your daily life is like, what things work (and don’t) for you.  And everything and anything else you can think of.

The aim of this project is to cover all angles.  To show that invisible conditions can be anything from a daily struggle to lead a normal life to the same four walls day in, day out.  Continuing the awareness beyond just a day or week once a year is the only way to make the invisible visible – that’s what I want to do.

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