WHO CARES: Chronic Illness in America
WHO CARES: Chronic Illness in America

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Lily Casura
Bellevue, WA

For five years in my early 30s I had a debilitating case of chronic fatigue. I'm 40 now, and I 've been fully recovered for about five years as well (hardly anyone gets better, let alone recovers--sadly enough). Chronic fatigue was my introduction to what poet Floyd Skloot calls the "international brotherhood of the sick;" worse, what sometimes is the "invisible brotherhood" --partly because you don't always know who else is sick, and partly because it's possible to be very sick, with an illness like chronic fatigue or fibromyalgia, and not look it; which raises questions in people's minds about whether you're really sick at all. (I guess it's important to point out, "invisible" doesn't mean, "imaginary" :-)

My overwhelming motivation at the time was just to get better, whatever it took; but it was very frustrating sometimes to encounter people's less-than-sympathetic, less-than-understanding reactions. There's a lot of cluelessness out there on other people's parts, when it comes to chronic illness, and it's painful when you're sick to also have to be patient enough to educate those around you as to what you need, or how to interact sensitively with those who are not well. Growing up, from the time I was a young teenager, my mom had cancer, and through my high school years, was dying from cancer. In some ways, though terrible, that was much more clear-cut. My joke with chronic fatigue used to be I can't be looking for sympathy because people don't give you enough to make it worthwhile! Sometimes what they ask you about, with a poorly understood chronic illness, ends up being a bit of projection from their own lives-are you depressed?, etc. But at the time, it's hard to sort that out.

I didn't find the greatest answers from the medical establishment, either. I felt like I was on a conveyor belt, going from specialist to specialist, a victim of the "hot potato syndrome," as my husband calls it, where my test results clearly showed that I was sick, but no one could quite pinpoint what I had, on top of the chronic fatigue. So each thing every new specialist in turn suggested was worse, and more frightening, that the last: "Perhaps it's MS, or lupus, or..." Eventually, I took myself off the conveyor belt, and that was the wisest thing I did. My strong academic background and research skills as a journalist helped me track down the cause of a violent allergic reaction I had to some medication for chronic fatigue, a reaction the specialists could not unravel; and success there motivated me to go after understanding what led to my chronic fatigue as well, and try to uncover whether there was anything constructive I could do or take to resolve it.

As it turned out, there was. (I was forced to turn to alternative medicine when my conventionally trained M.D. chronic-fatigue specialist went back to school! And natural medicine ended up helping, quite a bit, ultimately resulting in my complete recovery from chronic fatigue). Later, I wrote a series of articles on natural medicine and chronic fatigue and fibromyalgia, because I wanted to help other like-minded patients who were struggling with these difficult diseases, and found concrete, helpful information sorely lacking. I published a cover story in a local magazine first, then turned that into a longer series in a magazine for doctors, and recently have published a book on the subject, which is getting excellent reviews. (The book is "Gentle Medicine: Treating Chronic Fatigue and Fibromyalgia Successfully with Natural Medicine, by Lily G. Casura. It's available at www.SelfHealthPress.com and from Amazon.com).

I feel very strongly that for people like me who were chronically sick with something difficult like chronic fatigue, you have to put a plan in place on your good days (the few that you actually have) so that on your bad days, when you can't cope with thinking through difficult things and prioritizing, that you'll have something to follow to keep you on track. It's also important to have a supportive spouse-a fact that can hardly be over-emphasized. Even recent medical studies have shown that women with chronic fatigue whose spouses are supportive will do better in the long run with their symptoms, etc. I've found that I don't do very well in the social worker/psychotherapist mode, trying to handhold other people who are sick, and be there for them. Sometimes it frustrates me that not everyone who is sick, for whatever reason, really wants to get better. I would have thought, before I was sick, that that figure would always be 100%. For whatever reason, sometimes chronic illness fills a need, or is "doing something" for someone, as hard to believe as that might be. Hence, wellness, like illness, is not a one-size-fits-all kind of thing. And it's definitely not something you can want for another person, in lieu of that person wanting it for themselves. Sad, but true. (The voice of experience?) As much as the Type A part of me was more than happy to "just move on" after my own experience of chronic fatigue, as grueling as that might have been; at the same time, my husband and my brother both implored me to publish the book, so that I could get the information out there to help other people. I hope that's what it does. Writing, for me, does what handholding can never do, over chronic illness; it helps me get my voice out there, and more importantly, get the information out there, and have it select for the people who are really serious about getting well. I want people to know that there is hope, definitely; but more than that, I want to help the fellow sufferers who are ready to do whatever they can to get better. Being sick for me was not a place I wanted to stay and visit any longer than I had to.

I still have some weird residual health problems left over from that era, other autoimmune things like vitiligo that are fairly frustrating in their own right; but I've basically gone back to living a normal life, with the "life lessons" intact from the illness, which are extremely valuable indeed.

Ironically, the illness changed my life as a journalist: I ended up developing a somewhat-unwanted specialty in health reporting, by virtue of so much personal experience. And in my home life, it seems like I'm always researching some health condition of someone close to me. I've recently uncovered that my husband has severe sleep apnea (another chronic illness!) and that's led to his getting treated for that, though right now he's still in the early stages of the treatment. The other day when we were discussing our finances, a usually fairly bleak picture, we realized we could stop berating ourselves as financial idiots, when we stopped to consider that in the nine years since we've been married, we've never *both* managed to be well and earning at our capacity at any given time. One of us has always been sick, and of course when you're sick, you're not earning what you could. It's been tough enough for the two of us, with no house to worry about and no kids.

I can't imagine what people feel like who have. There's only one other person I know, a guy, who's had chronic fatigue and is completely recovered. He actually met me in response to the first article I published, and we've kept track of each other ever since. Ironically, he also produces work now, as a documentary filmmaker, intended to help other people who are sick, as well. One thing he and I used to talk a lot about at first is how health is sometimes very different from what people imagine. You can be healthy, and not be well. We wanted to get well, and we were willing to do whatever it took. Luckily, we had an illness that responded to our methods of treatment, too. The same can't be said, I'm sure, for every chronic illness that's out there. But there does seem to be an awful lot the individual can do; and there's a whole level of "illness as metaphor" going on, usually, where it's important for the individual to learn whatever they can from the experience, and not sit passively by, expecting a healthcare practitioner to take all of the burden, an I've heard practitioners tell me that some of their patients almost hand them their bodies, as though they were separate entities, and say, "fix me," and hand them their bodies back when they're done. We're all getting the feeling, it just doesn't work like that. Life is precious, and health is a precious reflection of our internal life sometimes. We as patients can't abdicate our responsibility or our participation, and expect health to be something someone else "does" to us or for us. That's way too disconnected.

I like the Chinese model that our physical health is an outer manifestation of how we're really doing. That's very interesting, and very thought-provoking. Now that I'm well, I've become fascinated with five element acupuncture, which purports to treat "body, mind and spirit," and which seems to strive to keep the body in enough balance that it can self-treat as effectively as possible. This seems like the finest view of health I can imagine; engaging your own body's resources, on every level, in keeping you well. It's a model I embrace thoroughly, and I rely on the practice more and more to keep me in enough balance to "treat" my own health, until something major comes along. I'm amazed by how much resolves this way. Apparently the ancient Chinese medical model used to believe in paying doctors to keep you healthy; when you were sick, it was obvious somebody wasn't doing their job! Although that's a bit tongue-in-cheek, it couldn't be further from the current American medical model. It seems more and more elderly are forced into the system just to find someone who cares, and when we see things like this, we've got to admit that the system as it's currently set.

It worries me to think of how crushing our own finances became, on the micro level, from years of ill health and working under par because of that. On the macro level, I see our American techno-medicine healthcare model suffering as well, and breaking down because of an over-reliance on the most expensive forms of healthcare, instead of increasing the practice of low-tech, proactive self-care that patients can embrace for themselves. I wonder where this all will lead us, with an aging population and insurance premiums continuing to skyrocket. Let's hope more sensitized people become part of the solution...

Zoe Albright, Stroke
Betty Bennett, Kidney Disease
Roxanne Bedford-Curbow, Seizures
Valerie Brekke, Fibromyalgia
Lily Casura, Chronic Fatigue
Billie Davis, Peripheral Neuropathy
Penny Day, Chronic Obstructive Pulmonary Disease
Julia DeJesus, Seizure Disorder
MS Patient, Fairfax, VA
Charisse Farmer, Hydrocephalus
Katherine Fielder, Chronic Pain
Zoe Francis, Juvenile Diabetes
James Hines, Hemochromatosis
William Holford, Emphysema
Nancy K, Chronic Fatigue Syndrome
Patricia Lawson, Natural Rubber Latex Allergy
James Locke, Crohn's Disease
Gary Maslow, various
Kathy Matthews, Parkinson's
Andrea Meyer, MS
Gina Owens, Chronic Fatigue Immune Dysfunction Syndrome
Alicia Salas, Chronic Pain
Allison Scott, Chronic Pain
Deborah Serrano, Stroke
Becky Shively, Phenylketonuria
Jennifer Smallin, Type I Diabetes
Joanna Southerland, Diabetes
Alina Valdes, Cystic Fibrosis
Elizabeth Wertz, Seizures

Jose Pedro Greer, Physician
W.F. Nagle, Physician
Ronda Riebman, Exercise
Cathleen Schilling, Case Manager
Jim Sykes

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