I told an outright lie: Stigma matters.

With M.E. in the media lately, I'm seeing all kinds of articles and responses to the new criteria and name the U.S. government came up with.  While there's a few good things about the report: they're saying it's a physical disease (rather than psychological or a syndrome) and calling for more and better research, still, there are major problems with it all.

For example, who are the U.S. government to re-name a disease that affects people globally?  And how is making the criteria so broad going to help people?  It means if they use this criteria in research, they will likely be clumping together a bunch of people who may have quite diverse issues going on.

Ten or so years ago, in Canada, a group of M.E. specialists (an international panel) with years of treating the illness came up with an agreed upon criteria.  Why has this been thrown out the window by the IOM?

At this point, all I can hope for is more good than bad comes out of this.  Still, I'm not sure if they are really describing the illness from which I suffer, so I'll continue to call what I have M.E.  Or will I?

When put on the spot this week as to why I've been so sick, I answered, "an autoimmune disease".  Sigh.  I just, for once, didn't want to face having to educate someone about what M.E. is, or deal with the immediate disbelief I often get, especially if the word fatigue comes up.

Yes, while I'm disabled by profound fatigue and weakness, the word fatigue just seems to trigger "Oh I get that too.", "Have you tried exercise, diet?", "Do you think you really have Lyme? or ____ (in other words, M.E. can't be an acceptable/legitimate explanation)", "I get down this time of year too.", "Have you tried counseling or a support group?" "I think getting out more would help." "Well you don't look sick, you look great!" etc. etc.

For once I didn't have to justify or explain that I am not tired or down, agoraphobic or unmotivated, I'm actually ill as in sick; as sick as the worst day of influenza (at least lately). Instead of all these things I usually get, the immediate response was acceptance.  It was almost bizarre, and just such a lovely relief that I didn't have to explain or justify anything.

Yes, I did a disservice to myself and others who are fighting to legitimize M.E. as the terrible and real illness that it is.  It's horrible of me. And I feel guilty to a degree.

You know one thing I've learned through almost 13 years of fighting the never ending weakness and immune stuff/viral stuff, is that  despite what any other person (friend, doctor, relative, stranger) believes, even what I believe myself, I'm ill.  That's the reality.  I've tried to ignore it, push through it, give into it, block it out, believe it's all in my head and somehow mind over matter.  Absolutely none of this has changed the reality…the truth that I'm ill. Not only that, and most angering of all, is the harder I try to ignore it and push through, usually, the harder I fall, the weaker and sicker I become.  It's enough to drive anyone mad.

But despite the fact that what anyone thinks doesn't change the reality that I'm ill, it does change my experience of being ill.  M.E.'s stigma and lack of research means the experience for me and other sufferers is much worse. There is often little support from friends or family, it's hard to get financial support, employment supports, and almost impossible to find a Dr. with, if they even believe you're sick, any knowledge of what's going on or how to help.

(While the research into the illness is like a drop in a lake, there are at least 6000 studies showing physical abnormalities, but try to find a Dr. who knows about one of them).  When you say what you have, and nine times out of 10 are faced with disbelief or belittlement, it makes the experience of being ill much harder.

I recently read that M.E. patients are 10 times more likely to die from suicide.  I think that statistic will come down enormously as soon as the social stigma is removed.  When you can say "I have M.E." the way I told that guy "I have an autoimmune disease that causes severe weakness" and are accepted immediately, on the spot as ill, even sympathised with, I think that will be absolutely huge.

In the future I need to say "immune disease" if I'm not up to dealing with possible stigma.  At least that's completely true.  While there is a chance there is an autoimmune process involved, there is not enough research yet to call it autoimmune."

Oh and while not really all that significant, my NP called and said my WBC was low again with this relapse.  Why does that happen? What does it mean? Just more, "Who knows. Your immune system isn't well".