Chronic Fatigue Syndrom Is Not Your Imagination. How about that.

June 5, 2008

The New York Times reports that Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu’.

That’s nice. What would be even nicer is if doctors would listen to patients who have a bunch of really miserable symptoms and assume that they might actually be sick with something even if it isn’t something that they know about, rather than dismissing them as depressed, wimpy, or overly-sensitive.

On not being that sick anymore and hope.

October 5, 2007

Some of you who have been reading this for a while or who know me know that I was sick for a long time. No one really knew with what. Various diagnosis included chronic fatigue syndrome, allergies, candidiasis, irritable bowel syndrome, low DHEA, “everything is just out of wack and we don’t know why” (a doctor actually once said this to me), and what I like to call the “you’re just fine maybe you should get therapy” diagnosis. Nobody really knew, is what it came down to. On top of this, I also inherited a pretty strong predisposition to depression and anxiety from both sides of my family which seemed to be totally unrelated to any sort of situation – just a general predisposition to sadness and anxiety.

This was quite serious from about 16 until I was 20 and had been problematic but sort of touch and go since then. Until about a year and a half ago when I started going to an acupuncturist in Cambridge. Over the year and I half I have been seeing her, things have improved a lot. Less sadness. Less stomach aches. Less headaches. More energy. Until. One. Day. They were gone.

I joined a gym. Three years ago, walking the five minute walk from my car to classes was an ordeal. I can’t believe I can join a gym, exercise, and still be able to breath and get out of bed and move my arms and legs without exhaustion. I take the lowest doses possible of antidepressants, and I think it is only a short time until… until those are no longer part of my life.

I write all of this because a lot of people seem to find this blog by googling chronic illness or sickness or chronic fatigue syndrome. When I was sick NOTHING anyone told me helped. I was sick of recommendations of doctors. Of treatments. Of cheerleading about how well I was handling it. Sick of people telling me I looked pale and maybe I should see a doctor. Sick sick SO sick of trying to explain to ANOTHER f’ing doctor my symptoms, previous attempts at treatment, and of this constant feeling that because no one could figure out what was wrong with me that somehow, maybe, I wasn’t really that sick and was sort of making myself sick because, well, you know, I was struggling with depression.

So this is not a cheerleading session to those who are experiencing chronic illness. You might get better. You might not. But, I guess what it is a statement of hope that you really might not be like this forever. That there are people in the healing arts – doctors, alternative medicine practitioners, other chronically ill folks who believe you. Who will listen to you. I guess I just want to say that you can get better, even when it looks pretty damn dark and miserable.

I am so thankful to be so much better. Thankful for my acupuncturist who listens to every little thing that my body does and feels and wants to know it, and doesn’t judge or imply that maybe it isn’t there or maybe it is because of something I am doing wrong.

We are taught that our bodies – our sickness – somehow happens to us. Or that we cause it. When it is really neither. We are in relationship with our bodies – we are our bodies – yet, they have a mind of their own. Both. And. And neither.

May we love our bodies. May we be fully in them – listening to them – open to the healing that can take place, yet gentle on ourselves knowing that incongruence between body and soul and spirit is both real and something we might be able to draw closer together. When I was sick I hated my body not cooperating with me. Yet, I had to also to come to terms with it being me. Me being it. Yet, also not.

This might not make sense. But I think especially for those who have been there, it might. I hope it does. I wish you so much hope. And a life without pain. Without that constant need for assessment – how is my stomachkneeheadfoottoe today?

In deep deep thankfulness for not feeling tired and sad and sick so much of the time,

and with heartfelt prayers for those who are still struggling with this,


Resources on Ministering to Someone Who is Chronically Ill

October 30, 2006

Regular readers, friends, and family know that I have struggled with chronic illness since I was in my early teens. Certainly, I am at a point in my life where my history with being sick and my current health doesn’t rule my life as it once did. Generally, I think I live a pretty normal life, perhaps with just a few more bumps in the road than a generally healthy person would face.

That said, I am still knocked over sometimes in realizing the difference it makes in one’s life to have been or be chronically ill. It gives you a new lens with which to see the world – in both a not-so-good way but also in some more positive ways. I realize that no matter how much better I get, I will bring that lens with me.

I was just reading the blog Journey to Somewhere which is written by a lovely woman about my age, who goes by the pen name Penguini, and who is in the congregation where I am the intern minister. I wanted to point it out because I am impressed with her ability to capture life as “a sick person” through her writing. I think for ministers, friends, or family who want to be there for someone who is struggling with chronic illness (or who has come through a chronic illness), Journey Toward Somewhere can be a helpful resource.

Journey to Somewhere also pointed to But You Don’t Look Sick, an online magazine “about living life to the fullest with any disability, invisible disease, or chronic pain.” In particular, Penguini pointed to an article on But You Don’t Look Sick called The Spoon Theory that I think deals well with helping friends and family better understand the day-to-day reality of chronic illness. Among other things, there is an article, 10 Tips for Visiting Someone Who is Sick, and there are also book reviews, and even a section called “sick humor” which is, of course, always important when facing illness. :)

Thanks to Penguini for her blog, writing, and, in general, her wonderful self. May all of those out there who are facing illness find healing, strength, and hope.

If you know of other good resources, please feel free to list them in the comments.

Check Out Well-Soul

August 23, 2006

I know some folks who read this are interested in holistic health and healing. I stumbled across a few days ago and it seems like a really neat place to check out. It is written by a UU woman who struggled with chronic pain for years. She writes that

My healing came through some complementary medicine and a realization that I had to take the lead in healing myself. The doctors were never going to do it for me.

Her other blog is


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!

From The Service of Healing

April 26, 2006

Many thanks to all who participated in the FUUSM service of healing on April 23. The following is the poem read (and written) by Annie Giddings who spoke about her healing journey. You can read Annie’s Lyme Journal here and read her blog here.

I’m trying to tell you something about my life.
About how I struggle from day to day
To simply live.
About how I wish, hope, pray.
About how I yearn to rid myself of the pain.
About how this body is not mine,
Not me.
I am not this body.
I am simply contained within it.

I’m trying to tell you something about my essence.
About my true being.
About how I long to break free from this body,
From this vessel that has endured so much,
And be free.
Fly with the wind,
Laugh with the trees,
Dance with the eagle as it soars through the sky,
And be free.
Be free to be me.

I’m trying to tell you something about my soul.
About who I really am.
About the way I search for belonging,
For acceptance,
For where I belong,
For my place in this world.
About how I long to feel warm,
And safe,
And know who I am,
And know there is someone who knows me,
And loves me,
And will always love me.
Someone who will hold me in their arms when I cry,
And calm my fears,
And complete my soul,
My longing,
My belonging.

I’m trying to tell you something about love.
About how I long to look into someone’s eyes
And see myself reflected back.
To see myself through the eyes of love,
Someone else’s love for me,
About how I sometimes wonder if this exists,
If there is really someone out there
Who will look into my eyes
And see all the way to my soul.
And bring out of me all that is beautiful
And hidden
Deep within me.
About how I want to know that I’m complete,
And that I make someone else feel the same way.

I’m trying to tell you something about who I really am,
About my true being,
My core,
My center.
About how I am just energy,
Just light,
Pure and white and simple.
About how I radiate and shine.
About how few can really see me.
Few really know me.
Few have seen my light.
About how it is protected,
Deep within me.
About how I’m afraid that if I let it shine free,
It will be lost forever.
About how I long to let it shine free,
To let everyone see how beautiful it can be,
How beautiful I can be,
How free,
How real,
How pure and good.

I’m trying to tell you something about my life.
About how this body is not mine,
Not me.
I am not this body.
I am simply contained within it.
–October 17, 2003

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.