invisible disease

Invisible disease? I can see it plain as day. Why can’t anyone else?
Up until a few years ago I had a completely normal life. A wonderful husband, four beautiful and healthy children, local family. Life was good. Of course we had our problems, like other families, but overall life was good.
Then came the day when my youngest became sick. The normally healthy child who a few years prior threw off pneumonia pretty easily. She rarely became sick other than a few sniffles. All the children were relatively healthy. Until that day.

I still remember that day. July 2, 2013. Yes, I remember the date and I am not one for dates. She started having symptoms of Crohn’s Disease, a form of Inflammatory Bowel Disease. July 1st she was perfectly healthy, July 2nd she was in the hospital.
I watched my youngest child go through various transformations. I’m not going to discuss the horrible diseases that she has been plagued with, instead I will tell you about her transformations.

When all of this started, my little teenager was considered overweight with a BMI of 26.4. Sure she was a bit overweight, but who cared, really? She was going through puberty and many girls gained weight during that time. In January 2014, she dropped to underweight at a BMI of 17.0. Just to give you a visual, she was 5’1” and 90lbs. Generally those with anorexia have a BMI that is below 17.5. By October 2014 she dropped another 20lbs and had a BMI of 13.2 and looked like a skeleton covered tightly with skin. She almost died 3 times during that time.

During this time, I watched her long, thick, straight hair thin to almost balding. She would break hair ties putting her hair up and now her hair wasn’t thick enough to be considered pencil thick. I watched it grow back slowly, thin, wispy and in tight little curls. Such a complete change. I watched it go from a strawberry blond to almost silver at it’s worst and then back to a light ash brown.

On October 2, 2014 I waited while she was in a life saving surgery. From there, I saw the change in her body. Her sunken belly that was unmarred by anything went to having several scars and an ostomy. An ostomy that was supposed to be temporary. Her blemish free skin is now marred with plenty of scars from surgeries and picc lines, as well as marks all over her from various IVs and blood draws. Stretch marks now cover odd places due to the rapid weight loss.

For a year and a half I watched her body return to health as scars faded, though didn’t disappear. I watched her hair thicken a loose curly that she maintains in unmanageable most days. I watched health return and her starved body become plump again. After the nasty scare of her weight loss, I don’t mind so much that she is now considered overweight. She is now at a BMI of 29.3. I don’t mind and we work on healthy choices and exercise now that things aren’t so dire.

Then in June 2017, we found out that she has another problem, this time with her brain. She will be undergoing brain surgery in July 2017. I will once again watch how a disease ravishes her mind and body. I will dress and care of her wounds, this time on her face as they enter her brain to save her life. During her senior year of high school. Luckily we were able to get her yearbook picture before surgery.

These are invisible diseases. To me, they are as visible as the smile or frown on her face. To others, they are completely invisible and are people are incapable of imagining any of it.


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