getting to know me

A few years ago I read a book about a man who was sick, in fact he was dying; wasting away from ALS, or Lou Gehrig’s disease. The book was called Tuesdays with Morrie. The author spent several Tuesdays with Morrie before he died and learned many valuable lessons from him. The point of the book, I think, was that love and compassion for oneself and others is the most important thing in life.  I’m pretty sure the point of the book was not to compare yourself to this man and then beat yourself up for not being as good at being sick as he was. But that is what I decided to do while I was reading this book. This is a very old habit I have. I’ve been doing it for a very long time and I’m very good at it. Still, it got me thinking about the lessons I have learned from having a chronic illness.

I am not as strong as Morrie was. I do not have a terminal illness. I am just really tired and in pain most of the time. And I’m just trying to figure out how to live with that and maybe along the way help someone else who is suffering. Some of the most useful things I have learned have come from the years I spent with my Buddhist therapist who told me to read Tuesdays with Morrie and many other valuable things. Some of the lessons have come from the time I have spent practicing Buddhism (and I do mean practicing), others have been handed down from my grandmothers, or garnered from books. But mostly they have come from the time I have spent with myself, a person with a chronic illness.

I realize that if you spent every Tuesday with me for lets say six months you would probably not want to write a book about it. You would probably just be really bored and slightly confused. That’s why I’ve decided to write a book for you, to save you the trouble. Also, I really like to write. Writing has been the thing that has saved me from myself. That and my sense of humor.

I have been cursed with a constellation of symptoms for many years, including severe fatigue, muscle and joint pain, depression, anxiety, gastrointestinal pain, insomnia and headaches. The universal symptoms of almost every disease I have ever googled. Desperate, unable to work and barely able to function at times, I began looking for answers. I used up a lot of my resources, both financial and mental, looking for a diagnosis and of course a cure. I was always under the assumption that a diagnosis came with a cure or at least a treatment. I took every new diagnosis as if it were gospel. Believing that if I did everything I was supposed to I would get better. I thought every new piece of information was my missing link. But so far there is no big picture. No root cause; no singular disease that ties me up in a bow. I doubt any one in their right mind has wanted to be told they have an illness. But I am not in my right mind. That is what this collection of symptoms that has no name has done to me.

Western doctors have diagnosed me with fibromayalgia, lyme disease, irritable bowel syndrome, Hashimoto’s disease, reflex sympathetic dystrophy, interstitial cystitis, chronic fatigue syndrome, celiac disease and psoriatic arthritis to name a few. Holistic doctors have suggested heavy metal poisoning, adrenal insufficiency and neuro toxicity. A Tibetan doctor diagnosed me with wind disease. A Chinese doctor told me my chi was blocked. A new age body worker said that my heart wasn’t in the right place. But one of the worst things a doctor ever did, after I tearfully pleaded with him to help me find some answers, was to pat me on the head and suggest that I get a massage.

I believe that most of my doctors sincerely wanted to help but their own undiagnosed illnesses got in their way. I have since diagnosed some of those doctors with the following: Generalized God complex; don’t know but can’t admit it disease; irritable doctor syndrome; and hearing loss. To be fair, most of my doctors have been kinder to me than I have been to myself.  I have diagnosed myself with chronic stupidity; bad karma; bad attitude; and temporary insanity…


6 responses

  1. I think your post speaks for many of us undiagnosed chronically ill persons. I particularly like the ending list of doctors’ own undiagnosed problems.

    I am also undiagnosed. Chronically ill for six years now on SSDI and Medicare. It seems such a shame that taxpayers should be burdened with having to support me when I spent all of my retirement money and money on doctors and tests, etc. trying to get properly diagnosed. I’m sure these doctors, who got paid, think that I’m fine since I haven’t been back to complain about my physiological symptoms. My blog highlights my doctor interactions from 2003 through 2008. I’m in the process of writing up what has transpired since then in between trying to do what one has to to get by when it’s difficult to even move.

    I’m beginning to think that, for me, Crohn’s Disease comes closest to wrapping all of my problems into a neat little bow. That’s because the disease encompasses a broad range of symptoms including everything you’ve named plus some. Now I need to find a doctor who truly understands the disease.

    Trying to find answers, I spent years home schooling myself on medical issues. Now I end up crying after seeing most doctors because so many of them harbor age-old obsolete beliefs about different diseases. They hold sacred what they must have learned years ago in medical school. The problem is that science knowledge changes exponentially. So talking to these doctors is like talking to someone who still believes the world is flat.

    • I agree, I recently found a doctor who is actually helping me, but I can’t tell you how many times I’ve cried after a doctor’s appointment. I’m sorry for all you are going through.I just checked out your blog. I love your doctor’s quotes. I have a few of those too, and some stories I’ve written about doctors that I’ll post soon. Keep writing!

  2. My Granddaughter has lyme disease. Or is it ADD, ADHD, OCD, panic disrorder, social anxiety disorder, osteo-arthritis, fibromyalgia, chronic depression, Celiac disease, or bi-polar? (All of which she’s told she has) Seems like a lot for a sixteen year old to carry around, doesn’t it. I guess that’s why kids wear back packs these days. They carry some pretty heavy loads.

    Like you, I waited and watched and wondered as armies of well-intentioned physicians each added a new set of letters to her name. Since doctors have to walk around with extra letters at the end of their names, PHD, OB-GYN, etc, maybe they want others to do the same.

    Unfortunately, in my granddaughter’s case, the extra letters didn’t bring in any extra income, like they do for doctors. Au contraire. And, the alphabet soups for what’s ailing her didn’t help her to feel any better. That’s what all the drugs are for. Right?. Unfortunately, the arsenal of medications don’t always help her feel better either. They help her feel different, which is sometimes better. Often not.

    I am a bad Buddhist, but a good grandma. It’s hard, way too hard, to watch a child suffer in the name of Karma. And clearly, there isn’t enough champagne on the west coast of California to make that process any easier. All that’s changed for me over the years is that I’m no longer expecting all those guys with borderline personality disorder, to help her. The ones who give kids letters of the alphabet to take home, instead of stickers or a lollipop. The ones who don’t help, but get paid anyway. Those guys.

    I try to accept and appreciate their struggle with the vastness of their not-knowing, and forgive them for the short-sightedness of their profession. They don’t know what’s wrong with her. And because she doesn’t fit easily into their science, she is mostly invisible to them.

    But she is not invisible to me. I see her, even when I close my eyes. My job as her grandma, and as a buddhist in private practice, is to understand that her body is something she’s wearing to help her find out who she is when she’s not wearing it. And accept that. The truth is, with or without the long list of letters that follow her everywhere, she is my Granddaughter, Julia. And I love her completely, with or without, whatever she has.

  3. Quit being me!!! No, on a more serious note, I am flat out and continually astonished and slightly terrified at the thought of this enormous network of people, usually (I find) of the Boomer generation, who are sick (to the point of disability) and not only are they (we) not being helped, no one can tell them (us) what they have wrong. I’ve been chronically ill since 1985 (at age 29) when I contracted a raging case of Lyme Disease and, while swiftly and properly diagnosed, was horrifically undertreated (6 days of 100mg Doxycycline per day). When I became unable to work I began a website (with lots of help from teenaged nephews) in an effort to organize my symptoms, their history and what was left of my sanity. I am fortunate (I guess?) to have journaled my illness. Recently, aspects of Sjogren’s Syndrome are rearing their mighty heads. Here’s wishing you much luck. Please feel free to e-mail me anytime at (that goes for you guys with the comments too).

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