More on Chronic Illness

August 22, 2006

I just read this article in the New York Times which is just soooo not what someone who has been sick on and off for years wants to read. It is an article about somatization syndrome. I’ve never heard of it before now, but it seems to be a situation where someone has aches, pains, fatigue, dizziness, or other various symptoms for which doctors cannot find a medical explanation. So you know what? Then it becomes a psychiatric disorder. I googled this and there apparently are actually people who really do have this. That is, physical problems are caused very directly by psychiatric issues and the people need psychotherapy. All well and good. But for those of us who do not have a psychiatric disorder and something actually is causing our fatigue, stomach aches, head aches, decreased immune system functioning, or whatever symptoms there are, this gives doctors such an easy way to say it is all in the head and just get some therapy. Can’t figure it out? Just chalk it up to somatization syndrome.

This reminds me of my most recent doctor who suggested I meditate as a response to my health concerns. Maybe she secretly thought I had this. Ugg. Luckily, the first site that comes up when you google this is a site that helps reassure those with Chronic Fatigue Syndrome or Fibromalgia (two very difficult to diagnose disorders that often interfere quite a bit with one’s every day life) that a doctor who is familiar with the various disorders will know how to differentiate between them. Of course, the problem is that many many doctors don’t know how to recognize or treat either CFS or Fibromalgia, along with 100s of other rare or complex problems that people live with for years because they are not correctly identified. Sigh. Sigh sigh.

While I’m certainly glad that people with somatization syndrome are able to be well-diagnosed and get treatment, I just hate to think about all the people who actually do have a non-psychiatric medical issue that are put in the “somatization syndrome” box. It is just so frustrating and sad that so many people suffer for years with medical issues that doctors cannot adequately recognize or treat because medical training and practice is so scientistic and regimented – so unholistic and so inattentive to the complexity of medical problems that don’t fit into any of the pre-established boxes.


Thinking About Being Sick for About 10 Years

July 9, 2006

This post is absolutely not to get sympathy or pity but it is supposed to be a little spiritual post to share some of what I have learned about health and wellbeing….

The situation is that when I was about 14 or 15 I started getting sick with various ailments and got sicker and sicker throughout my teenage years and no one really figured out what was wrong. I went to a lot of doctors who just sort of didn’t know what was going on. We finally settled on chronic fatigue syndrome, but that was just sort of a best guess. When I was about 20 and started seeing holistic doctors and seeking alternative treatment, I got less sick and it has been less bad since. But not gone. And now, the week that my mom visited for her longest visit EVER I got very very sick with multiple infections. I am pretty much always more or less tired. Think how you feel after you run maybe a mile or two. I feel like that really most of the time. So I’ve been laying around all week feeling sorry for myself but as I sit in my cozy little apartment and listen to itunes while surfing uublogs, I felt it important to honor a body that is more sensitive to her environment and reflect on how difficult it is to be in our bodies as our bodies rather than as vessels that get us around, like a little car you can take to the mechanic if it isn’t working. So often, I get very grumpy and declare that I’m just going to go to a doctor and insist that he or she make me better, whatever it takes. But in the moments when I am more mindful, I remember that Elizabeth’s body is not like Elizabeth’s Scion (that’s my cute little car). Of course, there are things that require a doctor to treat you – broken leg, breast cancer, etc. I’m not saying that doctors can’t help in the healing process. But what my body constantly reminds me is that it is part of me and I must be in my body and take an active role in caring for myself as a whole being – body, mind, spirit. I would probably not have the nerve to say if I had it to do all over again that I would go through my years of serious and less-serious-but-still-really-not-nice health challenges again. But, since I have gone through this and continue to, I am amazed at how much I learn from it and how much we are taught by our society that health is about the absence of being “sick” and after a bout like I’ve had this week, I forget how wonderful it is to feel pretty good rather than really bad. Hallelujah for the small joys of life!

What if we were taught early on that if we hold onto hurt, to trauma… that this will be held not only in our minds but our bodies?

What if we were taught that sickness is not something that needs to be “fixed” but a message our body is sending us that our systems are in distress and need attention – either physical, mental, or spiritual – or all three?

What if care of the soul was understood to be essential to health and well-being?

What if doctors learned to listen to patients? What if our doctor was one part of our approach to healing, rather than the mechanic who will fix us?

What if our culture prioritized health rather than productivity?

What if we didn’t feel guilty when we needed to rest more? To take care of ourselves more?

p.s. Speaking of small joys of life, super-companion-animal woman of our church who has cats, dogs, and, if I understand her correctly, a tourtiuse, will probably be adoptiong Harriet and Max our little foster kittens. This woman is super smart and kind and just overall cool (and her husband is equally neat although not as in love with animals as she is and as W. and I are) and she is such a good mama to her companion animals – we’re so excited that Max and Harriet might get to move in with her we can barely stand it. Max and Harriet are psyched too :) We can visit them! Yay!


Grandma Update

May 4, 2006

A big thank you to those who emailed me or posted comments about my Grandma. Her funeral is on Monday — she passed away peacefully on Wednesday with family around. In a very Kentucky sort of twist of events, the funeral was supposed to be on Saturday but it had to be changed to Monday because it interfered with the church tractor pull. At least some people in this world have priorities straight :) Of course, she would completely understand. I found it amusing.

One big disappointment is that I won’t be able to go to New York City with our church youth group. I went to New York City on a “Summer in New York” trip in 1996 (ten years ago!) with my youth group and have been back many times with various groups to learn and teach about all the things in New York City that one does not learn about in rural Ohio. Urban poverty. Different cultures. Coffee shops (I had my first cappuccino in New York at the Used Book Store Housing Works Cafe which is still in operation). Homelessness. Ultra-rich people. And all sorts of other things. I lived at the Bowery Mission. The youth group will also be visiting the Bowery and seeing a service like no UU service they have ever seen. If you want the free meal in the evening at the Bowery you are required to go to the service. Sort of like food for oil a la Iraq only it is food for God. There is a big push to get people saved as soon as possible. There are a few amen-chanters near the front and many of the others sleep through the service. I can’t wait to hear what the youth think of it. Or Tricia (our minister) for that matter.

Wish I was going. But New York will always be there.


Times of Crisis, Need of Comfort

May 3, 2006


I got off the phone with my mom about a half-hour ago and she told me that hospice says that my grandma will probably only live another few hours or maybe a day. What surprises me a little is how I run back to those religious places in my life that are most comforting even if I’m not even sure I believe them. I want to kneel down and pray. I want to talk to God, not the UU God that I know, that presence that is within us and among us, but my old God that was this big guy with loving arms living up in the clouds. In times of crisis and sadness and just struggle, there is something about going back to that non-intellectual place we were when we were younger. That love of familiarity and that non-complex deity that was just perfect and loving and comforting. I guess the great thing is that the divine can be both of those things. God/dess doesn’t always have to be complex or heady or in need of ten different adjectives (the great mystery, the spirit of life, interbeing…) but the divine is all of those things and more. For me, at least, both simple and complex. Both personal and diffuse. The great thing, theologically, for me about UUism is that we acknowledge that different paths work for different people and that we are all just sort of fumbling toward making sense out of something that is truly beyond words. Beyond our words. It is nice not to have the responsibility or the pressure to systematically develop a theology where it all fits together, that really gets to it all, but to say “This divine, this non-divine, this something, is so great, so loving, so complex, that we simply cannot get all of it at once into language.”

So, Grandma, mother of 12, grandmother to 26, wife to Arnold, devout Catholic, peace, and love, and gratitude to you as you go to that which is beyond our words.


On Chronic Illness

April 4, 2006

Today, I preached in the Billings Sermon Competition here at Harvard Divinity School where I am studying. I was not chosen as a finalist. As Wolfgang (my partner) pointed out to me, I’ve not been feeling well, and I am feeling particularly poorly today and I shouldn’t take it too hard. Not enough time to practice in the midst of preparing an already-late paper and doing work for The Kettering Foundation and visiting a friend over Spring break. But, for me, as I told Wolfgang, it just adds salt to the wound. What is the wound you ask?

The wound is being sick again. I do not have a cold, the flu or any other normal thing that I would really actually be glad to have. Slowly, over the past six months (or maybe even a year) my body has started to slow down… again. From age about 15ish until my early 20s I struggled with a chronic illness — constant fatigue, finger nails falling off, teeth falling out, naseau, vomiting, headaches. None of the twelve doctors that I saw was ever really able to figure out what was going on. As one doctor said, “All your tests indicate that things are just really out of wack.” An endocronoligist I visited said, “I’ve never really seen anything like this,” and declined to take me on as a patient.

So, not winning the sermon contest, to me, just represented one more thing that was marred by tiredness, headaches, exaustion. One more thing that I would normally enjoy and be glad to do that became an exausting ordeal, only not to work out well in the end. I got some test results in the mail on Saturday, the first tests I’ve taken since 2003, and they were, as I should have expected, out of wack. I feel as though seeing that on paper reminded me that I am not just tired, not just a little lazy (as chronically tired people will tell you that they often feel), but that I am actually “sick again,” the phrase itself a reminder that neither I nor my doctors have yet to come up with any name for this.

I do not write this to complain, but rather to help us appreciate our health, our vitality, our freedom to do and be without pain. I have had had some sores on my lip and in my nose for the past week or so, and it has reminded me how much we can take for granted the simple fact of our bodies cooperating with us. I know that there is another young woman, not far from my age, in our congregation who suffers from chronic illness, and a young girl who has had to and will continue to face chronic health issues. And, I imagine that there are others that I am not aware of, that none of us are aware of who carry silently in thier bodies the burden of illness… of dis-ease. Given this, I’ve decided to change my sermon on April 23 from the topic of sustainable living to healing. I hope that this won’t only be a sermon on healing, but rather a service of healing. I’m thinking of ways to involve the congregation in the service. If you would like to participate or have ideas, or have wisdom or stories that you want to share, please be in touch either via comments or email.