|This is genius!|
I said true stories, right? Honest emotions, right? Vulnerable, right? Well, here goes nothing . . . What I want to say in this post is really personal, but I also feel like it is worth putting my "stuff" on the line. I think it goes right to the humanity of illness. I want to be bold enough to tell the inside stories to the outside world.
"If I'm sick, can I still be pretty?" "If I have a disease, does it negate my beauty?" I've been mulling that question over in my mind for weeks now. I don't have body dysmorphic thinking, it isn't like I look in the mirror & see a post-apocalyptic zombie. I don't cry myself to sleep thinking that the last shreds of attractiveness disappeared with my last diagnosis. But, I am also realistic. I know that harboring a slow, quiet disease, leaving it undiscovered & untreated, has undeniably done physical damage, both to my inside & my outside.
Part of my healing journey, is acknowledging the damage, mourning the loss of what can't be undone, & trying to gracefully heal what I can from the inside out. I am perfectly okay with the aging process, but I have spent some mornings in the last year being shocked by what I saw in the mirror. The most difficult change, for me, has been weight loss.
I've always been a skinny girl. As a kid I remember my mom had to buy me jeans from the boys section called "super slims," 'cause I didn't have a curved line anywhere on my little frame. Somewhere in my mid teens I reached my highest all time weight (which was still not considered in normal range for my height), but by college I had thinned out again. I ate like all the other students, but never gained a pound of the "freshman 15." Even in pregnancy, I only gained the minimum that was considered healthy for me & my baby, but not for lack of trying to gain a bit more. In my late twenties, I stopped worrying about gaining and focused on just maintaining. I didn't yet know about my autoimmune disorders or that they were contributing to my inability to gain or even maintain my weight.
Then by the beginning of 2011, I noticed that I was losing weight. At first, I could only feel the change in my clothes & a few friends started to ask about it. Then I saw the evidence on the scale & noticed loss of muscle mass. By the fall of 2011 (this time last year) I was losing weight rapidly. I remember panicking one morning when I realized the number had dropped under 105. I stared at my clearly visible chest bones in the mirror. I started doing research on how to gain weight. Unfortunately, everything out there was for body builders. I adjusted my diet to take in as many calories as possible. It was actually not very fun to eat 3,000-4,000 calories a day, especially when I was so ill & had basically no appetite as the Celiac worsened. Then, a few weeks later tears poured down my cheeks as I read 100 on the scale. Late this spring I called my doctor & begged to be seen, when my weight had again dropped. It was my lowest moment at 94 pounds. She & I talked about the possibility of hospitalization to try to stabilize the weight loss before it got more serious.
In total I have lost about 25 pounds to Celiac Disease. This may not seem like much, but for someone who was barely hanging on to the low end of healthy weight to begin with, it has been devastating. My weight is now stabilized, but I have not gained either. My BMI remains far under the target range. I have also developed some deformities as the fat layer under my skin has atrophied. My new functional medicine doctor and I are working on treating it, but right now she is unsure if it will ever correct. (She & my nutritionist agree that AIPaleo is good for battling autoimmunity, but we all also realize it is not ideal for packing on the pounds.)
Weight loss is only the most prominent of my physical changes during this battle. I've gone round & round in the struggle with acne (don't let your doctors tell you it has nothing to do with what is going on inside of you) & hair loss. Changes have happened to my skin from short-term rashes to long-term discolorations. Even the enamel on my teeth has been affected.
Maybe it's vain to worry about beauty, when illness is on the table. I think every person who faces a serious and/or long-term illness must ask these questions though. Everyone wants to see themselves as healthy & attractive. I know men worry over this, but I think it is an especially fundamental question as a woman facing disease. I wouldn't be telling the true story, if I acted like it is not something I am trying to put to rest in my own mind.
Over the next few days I'll be sharing guest blogs by artists on how they view "diseased beauty." I've been very lucky in my life to meet some amazing people who make their livings contemplating & creating beauty. I thought their perspective would be a great way to help myself & others staring down autoimmunity (or for that matter, any disease or illness) to work out this question, "Can I be sick and pretty?"
An update to this blog: After over a year on the Autoimmune Protocol, I have made alot of progress in healing my outside. You can think of this healing literally starting on your inside and slowly making its way to your skin, hair, nails, and teeth. The deformities due to the atrophy of fat under my skin are gone. At one time I had basically a huge, visible "dent" in my thigh, but it is gone as well as the other signs of this problem. My hair loss stopped too. My dentist reports my teeth are in great shape. And finally, the acne. It cleared in the late summer (after about 15 months of AIP) and I haven't had to do much to maintain the clear skin . . . other than eat really well. I don't expect to be handed a modeling contract anytime soon, but with all that healing, I gained alot of confidence about the outside me too!