I always thought of blogs as being narcissistic, business related, or as my sister's, a way of keeping in touch or memorializing.

But, by necessity, I am learning a lot about myself. I find I need to get my thoughts out, and it helps me to know that someone else will read them. So I have created this little space for myself, to express the things I have trouble saying (be it emotional or physical trouble), to share what I'm going through, and what I'm learning through it.

I absolutely welcome comments. It's nice to know how people relate to what I'm saying.
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Friday, 18 May 2012


I have been very fortunate as a person dealing with chronic illness, and especially ME. I know that there are gazillions of people out there who don't believe ME is real, who think it's all in our heads etc. etc. etc. But luckily, I have had to deal with very few of those. Of course, those were all health care professionals, so I'm not sure what that says... but still.

The vast majority of people who know me, and know that I have ME, are very supportive and understanding. That's because not many people outside my immediate circles know. They know I'm sick but not with what. And that has just changed.

Since I got the diagnosis a year and half ago (holy cow time flies), I've not really cared who knew and who didn't, as I prefer living my life as openly as possible. But, because of privacy and political issues at the school where I was a teacher, and am now just a Mom, I kept it quiet, and politely explained to all who asked that I was not at liberty to discuss my actual diagnosis. But now things have changed.

I don't know what exactly changed, or if it's just been long enough, and that's all. But today, at an event for the Montessori community, my mother actually told someone I have ME. And I am sure, knowing that there were eavesdroppers (she saw them leaning in for a good long listen), and how people talk, and how curious everyone has been about what on earth has knocked a powerhouse like me down, that it will be everywhere very quickly. And that's not an overinflated sense of ego talking - it's just how it is in smallish communities where dramatic things don't happen all that often.

I am happy to be outed. I am happy to not have to worry about what to say, to whom, and when. I am happy to be able to speak openly. I am far more comfortable that way. But I'm also slightly apprehensive, about how this will be received. I am curious as well - curious to see if and when people contact me to find out if it's true and to see whether this will change how people treat me.

My apprehension has everything to do with the ridiculously misleading and patronizing name that was given to this illness - Chronic Fatigue Syndrome - as many have said, may as well call Emphysema, "Chronic Cough Syndrome," or Alzheimer's, "Chronic Forgetfulness Syndrome" - it's just as descriptive of the illness itself. Sigh. ME is slightly better, unless you happen to live in Great Britain, where it is known as a psychiatric illness. Yeah. But, and this is something I am also curious about and kind of excited about in a weird kind of way, being open about my diagnosis is probably the very best possible way of raising awareness about this mysterious and incredibly debilitating, if badly named illness. And the fact that it's a stupid name.

I am hoping that my luck with being taken seriously hasn't run out, and that I won't be coming across too many cynics. But if I do, I'll face them down, and walk away knowing that what I live is real, and that my limitations are physical, and what they choose to believe is their own problem. Then again, who knows, maybe everyone will get it. Or better yet, maybe nobody will say a thing about it. Or even better, maybe they have better things to do than gossip about me. I really truly hope that last one is the case, but I would honestly be very surprised - I mean two people were trying to listen in when my Mom was asked about it.

I am tired, and need to go to sleep, but I knew that if I didn't get this out, it would be making the rounds in my brain as I tried to go to sleep. So now that it's out, and you are reading it, I hope it actually makes some sort of sense, because I do not have the energy or focus left to proofread it...  :)   Good night!


  1. I'm proud of you. As more people are aware of the diseases that we face, more pressure for cures will come and more understanding will result. I freely tell people about my MS and am amazed and saddened that almost everyone I talk to knows someone affected by it. You are a hero.

    1. Thanks, Debby - You know I admire your approach to your MS, and I know that has been the case when I talk to people about depression - everyone knows someone. I have a feeling it will be somewhat similar. But man, it's nice to know there's no more secrets :)