Thank you thank you for a wonderful article! You've helped me feel better about myself - I am in a similar situation, although I don't have a diagnosis. All I know is that I am tired all the time, I have withdrawn from people because of the amount of energy I don't have in dealing with them, and my studies have gone haywire, due to not having the energy to finish assignments. All this time I have been blaming myself for being lazy. I ration my activities, knowing I will be drained if I try to do too much, e.g. change the bedsheets AND do the washing in the one day AND phone a friend. My university experience is similar to yours - perhaps we are attending the same one! I have also quit my job because I just don't have the energy to live and work. God knows how I'll live when my accrued leave runs out.

You've made some brilliant observations about the invisible disabilities. Perhaps we need to borrow some crutches and put plaster on our leg - would that make us valid and approved by the public when using disability parking?

Wishing you all the best.

Christine

Thanks for a courageous article. This cruel illness has touched my life although I'm not personally a sufferer.

Your approach is the one that works best - you can't cure the illness, but you can still have a life and live in the real world when you're sick - it's a matter of working within your limits, and getting the help of a professional medical team who understand the illness (instead of high-minded snake-oil salesmen with a barrow to push).

Effective treatments need not be expensive nor complicated. Many rely on nothing more than effective regulation of sleep/wake cycles, monitoring activity levels, and in some cases minor hormonal or muscular therapies.

When one reads biographies and learns about the number of women (usually) in history who spent months or years 'in confinement' with an unspecified illness, it really makes one wonder about the way certain illnesses have been hidden over the years.

In generations past, people with visible disabilities were hidden away and seen as a shameful and somehow complicit in their disability. Now they are for the most part welcomed into the community and are generally re-enabled to participate to their fullest in those activities the rest of us take for granted. Hopefully that time will also come soon for those with invisible disabilities.

Thankyou so much for making the effort to put this in print : I agree with all of it! (And I've just used up nearly all of my spoons - literally - reading it out to my husband...) :)

Thanks for sharing your story. It will help a lot of people better understand their conditions, it provides them really wish good tools for working well within the illness, and what you say resonates so deeply with the fundamental experience of chronic fatigue that it will make a whole heap of otherwise isolated people feel less alone.

I, too, hate having to educate people about my illness. I'm getting a little better at it because I finally got some help through community services and need to explain (or not) to many different people who come to help me. I am just about always cheerful and, just like you pointed out in your article, people think this means I am feeling better. So, if they ask, I now answer something like "good in spirit" which often gets the message across -- kind of :-). It's an isolating kind of illness even if you have plenty of people around because nobody really understands what it's like, even if they are extremely sympathetic and educated about it. That's a big part of why your article is so important. It breaks down that isolation.

I read with fascinated horror (or horrified fascination) about your access issues at university. I imagine heavy doors would have been the pits as well. Sometimes struggling with a heavy door can set me back for weeks, maybe months. These people just don't realise how much damage they can do to our lives by not believing us and not catering to our vital needs, needs that are like air and water for well people.

The things that you point out about access are vital issues to address as many, many people are affected by the inadequacies in this area. And, although I had read different ways of seeing our limited energy supply that were similar to your spoons, the way you described it made it make more sense to me than ever. Thank you for that and for all of the insights and inspiration provided in your article.

Kindest of regards,

Rose

Yup. That sounds pretty much like my experience of CFS - both times I have been struck down. The first time I was fortunate; after about 2 years I felt (almost) fully recovered. The second time (about 13 years later) I have not been so lucky, but I can function pretty well most days.

I, too have experienced the complete incomprehension of others (even my family) as to the exact nature of my condition. I take great comfort from sharing this experience with others ...

Thankyou for your kind comments. Though this was difficult to write, I am happy to be able to do one small bit to help raise awareness of invisible disabilities, the havoc they can wreak in ordinary lives, and the small adjustments that others can make to help make life easier.

Sad that the only people who seem to be agitating for accessibility for people with invisible disabilities are those with the least energy to lobby!