Activism, and an astonishing 77%

Apparently some people read the admission here that stress can bring on a relapse and decided to try it, by sending me a series of increasingly obnoxious e-mails. Rather than befoul my blog with that language, let me just say that if I were to censor the profanity, there would be very little left to print here beyond her name and mine, "you" and "are".

This is the sort of nonsense that activists face on a regular basis.

If you speak out about medical incompetence that causes your CFS to get worse because you’re not getting the right treatment, the medical professionals scream to high heaven (I’m really surprised none of them have arranged for a mob hit on Dr. Groopman for saying exactly what I’ve been saying about doctors who diagnose by stereotype!). If you speak out that CFS is not the same thing as depression, you get used to the psychiatric lobby calling you names. And if you set out to educate the general public that you are not just lazy, the psychopaths come out of the woodwork.

The accusations and the names I’ve been called as an activist would turn your blood cold.  Fortunately, I’m used to it. I was an activist long before I was a CFS patient. There’s nothing that I haven’t been called, starting with N****r Lover when I was 5.

The people who attack me for telling the truth are actually rather amusing, in their small-minded way. They can’t accept any viewpoint but their own. And they obviously think that using profanity will upset me. I have news for them. I used to run a landscape crew. There’s not a dirty word I haven’t heard in both English and Spanish (and a few other languages besides).

It never ceases to amaze me that people who have never read my medical records, were not in the room for any of my doctor’s appointments, aren’t even in the same state to know the reputation of those doctors, claim to know that I am lying when I say mistakes were made because the doctors didn‘t know as much about CFS as they led me to believe. According to research by Anderson and Ferrans, an astonishing 77% of CFS patients had negative experiences with health care providers, so it’s not at all surprising that I had negative experiences with 7 of 16 doctors over the past two decades, ranging from mild annoyance because I was left to deteriorate without medication for months to absolute outrage over serious malpractice including refusal to accept a prior expert diagnosis confirmed by another expert. My experiences are not at all unusual in the CFS community, and it would behoove the medical community to take note of that abhorrent statistic, as well as the counsel offered in Dr. Groopman’s book for reducing it.

People who have no idea what my house looks like, because they’ve never been within 3000 miles of it, claim to know for a fact that there’s rotting garbage on the floor because they think I‘m a lazy slob who can‘t be bothered to use a trash can. In fact, there is a trash receptacle near every spot that I sit. But it’s more fun to imagine the worst about someone you dislike and to spread the word to others.

People who have never seen me walk, who don’t know if I need my hands to hold onto a mobility aid or railing to keep my balance, have no problem with telling me to carry my own boxes down to the basement and calling me a liar when I say that would compromise my safety. They are unaware of the neurological and balance problems documented in CFS, so, again, they assume the issue is laziness rather than physical disability, not because it's true, but because of their own ignorance.

In every case, when I have offered to show them the actual proof that they are wrong, they have refused to give me an address or fax number where I can send copies or photos. Just like my doctors who refused to order the tests that would have been abnormal, these people have also made it real clear that they don’t want to see any proof that they are wrong. Their minds are made up, don’t confuse them with facts.

They do, however, want to see where other people have spread scurrilous lies about me. Luckily for them, some people are happy to lie and exaggerate, writing absurd and illogical fiction trolling for attention for themselves, knowing that there are people who will eagerly lap up every false story without questioning the factual lapses behind it.

And luckily for me, there are other activists cheering me on every time I write an article or give an interview, telling me that I’m doing the right thing, and people who know me in real life, who see the fiction writers for what they are: pitiable people who thought they had found a weak-willed sucker to manipulate and were surprised when I stood up for my rights and held them to account for their actions (or inactions) and told them to take responsibility or take a hike.

There are other people who have suffered at the hands of these same incompetent doctors. There are other people who have been taken advantage of by the same manipulators, frauds and professional cleaners who don’t clean. By speaking out, I reduce the chances that someone else will be taken advantage of.

If nothing else, the offenders may think twice about doing it again because they’ve been outed.

Tags: attack, abuse, activism, activist, lies, malpractice, negative experience, doctors, profanity, CFS, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, CFS/ME, ME/CFS, CFIDS