Thursday, June 25, 2009

What It Isn't

" there’s proof that inflammation occurs in the brain and there’s evidence that patients with this illness experience a level of disability that’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, or patients with multiple sclerosis."

-Dr. Nancy Klimas, on Myalgic Encephalomyelitis (What it IS)

It isn't AIDS, cancer or MS, but sometimes I almost wish it were, because we would get more understanding if we had one of those higher-profile, more accepted diseases. There are still people who think that we with ME are not ill, or are ill with something else, something more real.

Would you say to an AIDS, cancer or MS victim, "it might be candida?" Probably not. Yet friends, family and even doctors have suggested that what my 15-year-old and I are suffering from might be a panoply of other illnesses.

Today we got test results back. It's not celiac disease. The gluten-free diet suggested by the rheumatologist, followed faithfully despite cost in time and money for two and a half months, has been worthless.

We baked with gluten-free flour, went out of our way to find other gluten-free products, turned down the free pasta and bread that were offered to us although we don't make it through much more than a week on what food stamps provide. We turned down all those wheaty oaty ryed-up treats and I brought gluten-free muffins to a potluck. It didn't make us feel any better, except that I was pleased that the celiacs present were so glad for the muffins.

Doing without gluten was not making us a bit more well, but I heard that it can take many months so we stuck it out. I learned at last through my own research that there's a test for celiac disease, which is the intolerance of gluten that torments so many people. So I asked the doctor for that test.

Today, the test came out negative. Going wheat-rye-oat-free was an education and it made me sensitive to the plight of those who can't digest gluten---I'll bring them those muffins again---but what a waste of our time and money, Dr. Rheumatologist. Why didn't you tell us about the test?

It's a relief to be able to eat cheap, yummy pasta again, but it would actually have been more of a relief if indeed going without gluten had relieved any of our symptoms. But Celiac Disease is what it isn't.

Now listen.

It isn't candida either, or mold or allergies or sinuses or depression or any of the other things that have been suggested by kind, well-meaning people who hear that we are ill and long to solve our problems. Believe me, I understand the impulse. I've researched so many things it might have been, since long before we got diagnoses.

It's ME. We know that, and it's hard enough for us to accept it, but we have to. So please, you accept it too, and stop looking for other causes for a very clear presentation of this very real disease.

Granted, we could develop any of those other problems on top of ME. An already-present propensity could flower in the presence of ME, or our weakened immune systems could allow us to succumb to something we had no problem with before. Just like last week, when I had that awful cold on top of ME, yes: ME or MS or cancer or AIDS patients can all get sick with other things in addition to their chronic illnesses. But to blame our chronic illness itself on anything other than ME is denial and it won't help us get better or bring anyone any closer to treatments or a cure for ME.

Know this.

What it is, is Myalgic Encephalomyelitis.
We feel pain almost always.
Our circulating blood volume is low and our hearts are working extra-hard to compensate.
Because of that cardiac stress, exercise is NOT indicated. It makes us feel far worse.
We are exhausted, from the stress on our hearts. From the inflammation in our brains we are sometimes dizzy and sometimes confused, and we might need to reread, ask you to repeat, forget, lose the thread of our own trains of thought, need to hang up the phone and go lie down.

I know that the doctors, the family and the friends meant well. If only I didn't have to educate doctors when I can barely read long enough to educate myself! Dr. Rheumatologist, thank you for the intention if not for the advice.

You can see our pain and you want to help? Thank you, thank you so much. I have been touched by the caring we've encountered. But if you want to help, don't try to tell us what it might be. We need rest and we need less stress, so if you can provide those, great, and if not, your understanding and caring are appreciated fully, without any attempt by you at offering a cure for something that it isn't.


  1. Dear Kassy, I've tried and failed to be of service in this area. Good luck on your Quest. I've got burnout from your burnout. And this post hasn't helped me too much, even with your thank you's. You are quick to judge those who wish you well. IMO. And that's tiring for the well-wisher. May you & your family experience wellness however it can happen.

  2. Thanks for the thanks. I, for one, am done trying to help. You come out slugging when there's no need to slug those who wish you well. And frankly, I've got burnout from your burnout and anger. I had to go through my own healing process and you have to go through yours.

    I've felt like I've been on you and your family's "hit list" for trying to help...and have often been met with you holding your ears and yelping "TOO MUCH INFORMATION!"

    May you heal and be happy.

  3. I guess I hit the wrong tone. All I'm saying is, I have to work from where I am, and where I am is ill with ME, not ill with something else. I feel like you're responding not only to something I didn't say, but to something I didn't mean, and I hope others won't read it the same way. Love.

  4. Oh, and maybe I ought to add, this talk of diagnosis is in terms of Western medicine. I know that Chinese medicine views the body's systems differently and calls my condition something else, and I do hope to get to a Chinese herbalist soon so I can put into effect that great research you did for me, Marlan!

  5. See? This is why I got pissed off at the headache specialist. She had papers right there saying that exercise can only worsen your and Coll's condition (and, judging by what I've read, lead to other potentially fatal conditions - heart-related, as I recall), and yet she suggested a total of six times that Coll exercise - two of those times after I had pointed out that exercise would exacerbate the ME.
    Is that what doctors are supposed to do nowadays? Suggest treatment methods that would further debilitate and could kill their patients?

    And you said I was rude.
    I'm just saying.

  6. Well, it's not the info, Sorcha, it's the manner of presentation. Doctors have spent a ton of years and money proving themselves knowledgeable and nearly-infallible, and they don't take kindly to new information that contradicts their certainty, so my mission is to slowly and gently educate them, while disregarding any of their advice that I know to be contrary to our needs. I'll be emailing or printing out and sending them copies of the Australian treatment protocol as well as the Canadian definition, and we'll work it from there. I'm not the first ME sufferer who has had to educate her doctors. . . though I wish I could be the last!