Sep 8, 2009

The Emotional Cost of Undiagnosed Celiac Disease

The health and financial costs associated with undiagnosed celiac disease are well documented, but what about the emotional cost? Many people who lived for years with undiagnosed celiac disease know this emotional cost all too well. Here is my story.

My celiac disease symptoms seemed to be triggered by pregnancy and became worse over the next five years. My knees hurt so bad that it was difficult to sit on the floor and play with my daughter. Kneeling for bath time was impossible. Daily headaches and facial pain made attending a toddler playgroup or music class a challenge. Chronic insomnia made my body ache and my knee and head pain worse. Medicines to treat the insomnia left me feeling drowsy, dizzy, and foggy. I was so exhausted that there were days where I was unable to drive my daughter to preschool, and other days she was late because of Mommy being stuck in the bathroom yet again.

On a good day, I could read, spend some time on the computer, and do a little shopping, but those days were not frequent. Fortunately, I was able to be a stay at home mom. Simple daily living tasks were hard work for me. Most evenings, the pain was so severe and I was too fatigued to cook dinner.

My health problems definitely affected my marriage. By the time I was finally diagnosed with celiac disease in 2007, we were already in marriage therapy, but it was too late. Our divorce was final earlier this year. I wonder if we would still be married if I had been diagnosed with celiac disease when I first started showing symptoms or even after only a few years. The answer is maybe. Of course, a marriage is complicated and involves many issues. However, I know that we would have both been able to cope more effectively with our problems at the time without the stress of my health.

Yes, there was a negative emotional cost to my celiac disease. However, it led to greater emotional strength as my health improved significantly. Sleeping well and being able to think clearly without pain enables a world of possibilities. I certainly was not an optimist five years ago. Now, my entire outlook has changed. My ex-husband and I are good friends. Today, I am truly living. While undiagnosed with celiac disease, I merely existed.


Meredith said...

This sounds a lot like my story. Though mine also included being a military wife and my problems started right before 9-11. And then throw in a liberal dose of air force hospitals and doctors not even insinuating I was crazy, just straight prescribing me prozac for my 'symptoms'.
I was diagnosed about 6 months before our divorce was legal, and though we are on amiable terms he still falls into that pit of thinking I'm crazy or a hypocondriac as we did 10 years of looking for 'why' with the military's help.
I'm very very glad I was diagnosed. I can run and play with my kids again and my life is so much better. But it's hard to get past the 'crazy lady' tag I had for so long even with myself. And the bitterness that it was so easy a blood test by my allergist figured it out.

marylandceliac said...

I too was finally diagnosed by an allergist. Even though celiac isn't an allergy, it is good that allergists are testing for it. Thanks for sharing your story!

alison - surefoodsliving said...

Thanks for your personal story! It really helps people to hear specific symptoms that people live with for so long, thinking that's just the way it is.

Eric said...

It seems all too common that people are unwilling to admit that they have a problem (that is no fault of their own) and to deal with it, for they are afraid of the changes that might occur in their life. After coping with something for years and years, it sometimes seems easier to continue subsisting as is than to make life-altering changes. Of course, most of us know, in hindsight, that those changes ended up being for the better. Thank you for helping to spread the message--the more we do it, the more people will listen and be able to improve their circumstances.

Anonymous said...

Thanks so much for sharing your story. Those recently diagnosed need to know that there is more than physical healing that needs to take place. Following the GF diet will heal the body, but picking up the pieces of a life half-lived for so long is the other part of the story.