Moderator note: We've merged a number of threads to collect Naomi's blog posts into one thread. An article originally printed December 2016 but now updated with an audio version as well. https://www.opendemocracy.net/naomi...26-years-on-why-is-it-still-poorly-understood
Thoughts On Reaching 40 by Naomi Whittingham http://anilvanderzee.com/thoughts-on-reaching-40/ I can relate to much in this article, having become ill my late teens and am now in my 40s.
When I look at my own son, or when I read accounts like this, I always realize how lucky I was to have been healthy up to the age of 49. There's a deep, burning anger about their neglect that drives me on: I could accept it more if society had done its best for them, but it just ignores their situation.
Very relatable and good to read such wise reflections, and someone putting words to these thoughts and feelings. Am deeply impressed over Naomi.
Good of Naomi to make this point. It's often overlooked, since media articles and films etc are, almost by definition, usually written by or about those a little less severe, or about the very severe who have supportive family.
Agree! It also turns my stomach each time I see the oh-so-old-angle; patient came down with whatever, simply wouldn't accept it and is now doing much better. Bah!
I agree Graham. My husband and I were 28 when we were first ill, but we had been able to go to uni, travel, work, get married so luckier than so many. I'm really sorry Eagle and others who have missed out on so much of life x
Strong fellow feeling here, @Graham. I was lucky to be healthy to age 40, my daughter got ME aged 16, though it had probably started sooner, as she had a gradual onset. Now 37 she has had no life apart from living at home with me. I am humbled by how stoically and without self pity she copes and makes the best of the little she can do. Naomi's article is beautifully written and so so sad but uplifting at the same time.
I'm happy her blog is well received. I felt it was important to share her thoughts and wisdom with everyone but I can't help but feeling angry about the situation with ME as well... Thank you for sharing it!!
From FB: Voices from the Shadows A moving, informative and beautifully presented new website by advocate Naomi Whittingham, with her collected writings and much else... Words from a Hidden World Alive but barely living: the severity of ME is rarely acknowledged in the mainstream media https://alifehidden.com/2018/11/25/words-from-a-hidden-world/ eta: there is a lot on this site well worth sharing. eta2: "So today I take this new direction with my writing and add my voice to all those speaking out online. I hope that many will relate to what I have to say, particularly now that I can express myself with greater freedom than previously. I also hope that my words will reach beyond ME circles and into the wider world. Our lives have been hidden for too long."
"Remember that history does not always look kindly on beliefs that were once firmly held by the medical establishment. In relatively recent times, for instance, homosexuality was held to be a mental illness warranting the most barbaric treatment. Before challenging a patient, a wise doctor might first question the accepted orthodoxy of the day."
Dr Paul Williams MP is a GP and member of the Health and Social Care Select Committee ETA I hope he gets the committee especially Chair Dr Sarah Wollaston to read this she needs good information to balance out what she gets from Wesselyites.