You don't know $#% about CFS

People treat me like a fool or liar because I have an incurable disease. What can I say to these idiots?

By Cary Tennis

Published July 25, 2012 12:00AM (EDT)

                                                                                                                                                                                                                                                                                                                                                                                                                       (Zach Trenholm/Salon)
(Zach Trenholm/Salon)

Dear Cary,

I have had it. I've been dealing with an illness that I in no way encouraged into my life, but it came, with a bang and has caused me to become ill enough to be unable to work. I was an emergency room nurse and I worked in an extremely busy facility when I became ill. My job was decidedly not sedentary, and on my days off I skied, biked, hiked and participated in regular gym exercises and classes, as well as yoga. My diet was great, I didn't smoke, drink, use drugs and barely even drank caffeine. And yet I became ill overnight. I did try for several years after falling ill to continue to work at less intense jobs, for the most part, but the main feature of this illness is weakness and I finally admitted that I just couldn't continue in any capacity after collapsing at work at several different jobs. My last job entailed only sitting for the work day, but even that was too demanding for me, and I was finally placed on disability after trying so hard to find a way to continue to be productive.

I don't look ill, and when I do manage to go out I look like normal people. I don't have obvious deformities or gait issues that would allow others to "see" that I am "actually" ill, afflicted with a virus, so ... I get treated to a vast variety of patronizing attitudes that clearly message that if I weren't so neurotic I wouldn't have any problems. Or if I just ate this, or didn't eat that (never mind that they haven't asked what diet I follow before giving out dietary advice) my world would be right again and I wouldn't keep bothering the people who've stuck their noses in my life. Many of these people are complete strangers who are offended by my being ill and feel no need to hide their feelings about this nutcase begging for their sympathy (which I haven't, but that doesn't seem to matter, either).

Oh, did I forget to tell you what disease I have? There's a reason. I get treated with respect when I have to finally tell someone I'm disabled. That usually comes when they ask me for something I simply can no longer do. But then they want to know what the disease is and after I tell them is when the attitudes come up. I have what's insultingly known in this country now as chronic fatigue syndrome. People with no medical knowledge, and even some with professional degrees, have the attitude that this is a neurosis and nothing more, and they start stuffing me with all kinds of ignorant advice to overcome my neurosis. Just exercise more! Don't eat _____! Meditation will cure you! and on and on. This comes from total strangers and from friends of many years.

I am not so neurotic that I would allow myself to become homeless as happened when my long-term disability insurance canceled my policy. In America those companies can issue policies and accept premiums, but they are NOT required to pay if they don't want to. The law is entirely on their side. Doctors who have never seen or even spoken with me have more value than the doctors who treat me. They can even make up conclusions. One of the insurance company doctors called me a liar to my face, twice, while "examining" me, even though my vital signs supported my statements fully. Vital signs cannot be faked, but they didn't want to pay me, so a liar I became in their eyes, and I lost my benefits. The young woman from the insurance company who told me I was being canceled laughed when she knew she was sending me into homelessness.

I have no family social support and little emotional support, though I don't understand why. My sisters and I are friendly and I give them help unstintingly, but when I came up needing I was ignored, which has been and continues to be very painful. My son is on the financial brink himself and has unstable housing.

So this disease has hit me hard. Many days (including today) I cannot get out of bed except for basic needs of life. Pain accompanies every motion. Social isolation is great, but not total (thank you, Internet). I do happen to live in a great community that is more accepting and also gives me a chance to participate as much as I can in a normal life. I don't date because men my age who are healthy want a healthy partner, and I certainly cannot care-take an ill partner myself. Relationships haven't developed once I have to set physical limits on what I can do. I'm largely fine with that, as I have always been more comfortable with a great deal of solitude.

Mainly what I miss is being treated with respect when people find out about my illness. I have tried using the term used overseas, myalgic encephalomyelitis, but it frightens people and they ask for further explanation. I don't really have to give it, but I do try to help people make sense of what they have just heard. I'm still a healthcare professional and like to ease suffering, even when I know that as soon as I've done that people will inevitably turn on me with their ill-meant and superior advice, which hasn't been asked for and is always wrong anyway. After I spend half an hour kicking back to the person their astounding medical discoveries I'm exhausted and feeling betrayed, and certainly irritable.

So my question is how do I keep this under wraps? I am not ashamed of having it. Irritated and, yes, sometimes still angry, but not ashamed. How do I protect myself when I'm out in public with other people who know and let slip to a new person, who then bores me and others silly with their idiotic and insulting cures. There are so-called support groups for this, but we're so weak we never meet.

What has prompted my ire today is having met a woman over the weekend who told me she had this diagnosis for nearly two years but was cured by walking and not drinking beer. A) We now say that if you recover in less than five years it's not CFS, but a version of mono; and B) She never asked if I drank beer (I do not drink) or if I walk (I ride a bike, do yoga and walk).

I am not getting well. I have good days and bad ones, but I will not ever recover and get my life back. What does it take to get respect for an illness that was maliciously named in the first place?

I get out and volunteer in my community as best I can, I take care of myself and help others. So why do people feel they can treat me with disrespect as soon as they learn the nature of this illness?

I'm at my wits' end and I'm tired of fighting this alone.

Thank you,

Seeking a Real Cure and Getting Snake Oil

Dear Seeking a Real Cure,

Cognitive behavioral therapy is a recognized treatment for CFS -- not a cure, but a useful treatment. CBT also helps us deal with things other people say that drive us nuts.

So here's an idea:

You might use CBT not only for the direct effects of CVS but also for the effect the attitudes and behaviors of others are having on your emotional state.

So I just got down my weathered copy of "Feeling Good" by David D. Burns, M.D., and leafed through it, looking at his classic and very amusing dialogues. Taking inspiration from them, I will now improvise a dialogue you might have with a person about your disease, crudely employing techniques Burns describes in his book.

Her: So our friend told me you have chronic fatigue syndrome.
You: Yes, thank you for your concern. I do have that diagnosis.
Her: I had that diagnosis, too.
You: Oh? Thank you for telling me that. What was your experience?
Her: Well, I had the diagnosis for nearly two years but was cured by walking and not drinking beer.
You: Wow! I'm so glad to hear that. You must be happy.
Her: I feel great. You should try walking and not drinking beer.
You: Well, thank you for suggesting that. It's kind of you to think of me.

The conversation could end there. But she might persist. She might say, You know, seriously, you really should stop drinking beer and walk more.

You: So, would I have to stop drinking beer altogether, or would an occasional pint be OK?
Her: You have to stop completely. Cold turkey.
You: OK. I think I'm capable of that.
Her: Beer is fattening. And alcohol is a poison.
You: That's so true. And as far as the walking, how far does one have to walk?
Her: Well, I walk every day.
You: That's great. Thank you so much for sharing your experience with me.
Her: You're welcome. Seriously. Beer was causing my CFS. That was all there was to it. Once I stopped drinking beer and started walking, I was cured.
You: Fascinating. Thank you so much. I feel more energetic already!

I'm having a little fun here, but you get the idea, right? Don't get suckered into a stupid conversation with people who don't know anything and don't care about you. Find a way to take delight in what they say.

It's not only what other people say to us but what we say to ourselves that affects how we feel about life. I note that you say that you are not getting well and that you "will not ever recover and get my life back." It may help you to practice some CBT on that as well, replacing these beliefs with more nuanced and concrete assumptions. For while you may indeed have this disease your whole life, studies show that moderate improvement is possible, and scientists continue to work hard to find a cause and a cure. Holding these thoughts may help moderate your mood.

So, my heart goes out to you on this issue. Many people do not know what fatigue is like. I had not experienced serious fatigue until after my cancer treatment. For the first time in my life I felt the baffling, frustrating and debilitating effects of fatigue: inability to concentrate, loss of memory, tiredness, apathy, you name it. And I must say, I'm not recommending CBT as a panacea; I know too well how when you are truly fatigued, you're just fatigued and no amount of thinking is going to fill you with energy! But it can help at times.

As to people not recognizing that you have a disease, I have had similar experience on that score as well. Sometimes you have to take care of yourself and know that others are just not going to get it.  At the risk of sounding Pollyanna-ish, having to accept that has been an unexpected gift.

Good luck living with your condition. It is not your fault, and it's not a character flaw. It's a disease.

p.s. From the FAQ for the PACE trial:

"Question No 41: Does the effectiveness of CBT indicate that CFS is a psychological condition?

"Answer: No. The effectiveness of cognitive behaviour therapy (CBT) as a treatment for CFS does not make assumptions about the nature of the illness. Pigeon-holing CFS as either physical or psychological is not helpful as many if not all illnesses have elements of both. CBT is used widely to manage many medical conditions such as arthritis, heart disease and chronic pain. There is also evidence that CBT can have an effect on the body. For instance it has been recently found to reduce repeat heart attacks in people who have had a first attack. This is because CBT helps to change behaviour, which in turn changes the functioning of the body."

Also, a shocking number: "The Centers for Disease Control reports that more than 1 million Americans have CFS and approximately 80% of the cases are undiagnosed.[10]"

Cary Tennis

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