This post is not what you might have expected; it even has a working title:
Growing up with ME: surviving childhood and becoming an adult while chronically ill
We would like to invite you to participate in an anthology on children with ME. If you are an adult who became ill as a child or teenager, we would like to hear from you (see below for further information on how to contact us).
Background: children and teenagers suffering from myalgic encephalomyelitis are especially vulnerable; having become ill as children ourselves, their welfare is of particular concern to us. The experience of becoming chronically ill when young is quite different to becoming ill as an adult. Children often endure illness unheard and ignored, with none of the life experience or authority of an adult to help them cope with their significantly altered condition. They have the added problems of dealing with incompetent medics, school psychologists, physiotherapists, uncooperative school staff and social workers, without many of the rights adults take for granted.
Purpose of this project/anthology: the aim of this project is to contribute towards a shift in attitude among the relevant professions and society. The Tymes Trust have been working with and for children and their families for years. As a contribution towards such a shift we would like to reach children, teenagers and their parents with this anthology, in support and recognition of their situation and, ultimately, to donate money to the Tymes Trust. We would also like to take this opportunity to creatively collaborate with people who are in similar circumstances but have perspectives and insights to offer that may be new, creative, inspiring or in some other way helpful.
Method: the compilation of up to a dozen stories, each about ten A4 pages long, by those who were diagnosed with ME as children. We would like to encourage you to contact us regarding the possibility of your participating in this project. We realise this would be an additional strain on your health, so we would like to ensure from the outset that anyone wanting to participate would be capable of completing their work.
Timeline: we would like your story to be submitted by the end of May 2015 if possible.
Proposed content: areas we would like to cover in each narrative are,
i) When and how were you diagnosed.
ii) How were/are you provided for?
iii) How did you obtain an education?
iv) Who cares for you in your adult years?
v) Looking back, what is your experience of the welfare state’s stance on children/adults in terms of benefits?
vi) In conclusion of your story, we would like you to reflect on the support you had and based on your experience what you would like to suggest happen in order to improve the situation for children and their families.
We believe every narrative should contain what the authors feel is most relevant and necessary to be shared with a wider audience.
As a brief example of the type of contribution we’re interested in I’ve written a short passage explaining my own experiences.
I became ill in November 1985, aged thirteen years. Having spent an extremely enjoyable Saturday playing tennis, going into town shopping and pursuing other fun activities healthy youngsters take for granted, I woke up the next day and leapt out of bed (I usually did, being annoyingly energetic) and collapsed on the floor. After crawling back into bed, I called out for help in a rather feeble voice while wondering what was wrong with me as I felt so exhausted I could barely lift an arm. Other symptoms included very swollen glands, a raging throat, hot flushes and intestinal bleeding (I kept quiet about the latter for some time due to classic teenage embarrassment). The GP called round the next day and I was diagnosed with glandular fever. I had bloods taken and spent a week in bed, during which time I improved considerably, at which point I decided I’d spent enough time resting and prepared myself to return to normal life. I still felt tired and the hot flushes were annoying but I was confident I’d be able to shrug off what I regarded to be the dregs of a nasty infection, more fool me.
I was disadvantaged by three major factors:
i) My own personality traits, I hated resting and it took a long time for that attitude to be ‘beaten’ out of me
ii) The medical advice was always to push myself, not once did a medic suggest I take it easy following such a nasty infection. I was encouraged to do as much as possible; having studied infectious disease and the immune system this is extremely poor advice for anyone suffering from EBV.
iii) My natural sportiness: I played rugby, football and tennis regularly, cycled everywhere and did martial arts of a Monday night
Due to the aforementioned encouragement, I returned to school and all my sporting activities. Needless to say, after three weeks of struggle, while the fatigue, hot flushes and throat continued to worsen, I ended up back in bed. I was to spend far more time stuck in the latter over the next three decades than I’d have thought possible.
We would like to encourage you to disseminate this blog post, especially to friends and family members who you think might have an interest in this project. Please note that this is a project which will, at best, generate some money to be donated to the Tymes Trust but that those taking part will not be financially rewarded. That said, we hope that we all derive some fun and a sense of purpose from this project.
If you are interested in participating in this book project your first step is to fill in the contact form attached to this post and drop us some lines including when you became ill as a child or teenager. We will give you more specific information about the writing process. Please do not write your story and submit it without communicating with us first as we would like to make certain we know all our participants. International participation is welcome; this anthology is not intended to be written from purely a UK perspective. Any contributions will need to be written in English please as translation would be too much for us due to ill-health.
Thank you for reading & we hope to hear from you soon.
Claudia and Geoff