A Love Letter to Those That Have Auto-immune Diseases...and to Those That Don't

Just stick with me on this one...it's long but I think it's worth it to make it to the end...

I have been thinking about self-love and self-preservation a lot recently. A lot of this has come because of my recent diagnosis with an auto-immune disease called Celiac Disease and the huge paradigm shift that has followed since. 

When I was 12, I started getting terrible stomachaches. Not like a normal "upset tummy"--these suckers would take the life out of me. My heart rate would elevate, and I would sweat while my body would stiffen and shake. I would groan and cry and lay my head on my backpack in the public school restrooms praying that it would pass. When it hit its peak, I would start seeing black spots in my vision and intense vertigo/out of body before I would slam back down to the reality of the pain that would leave nail marks in my clenched fists. The exertion it would take to get through these feats of self-preservation would leave me physically spent--a complete exhaustion of body and mind.

It was bad. I mean, I've had stomach flu and food poisoning. Heck, I've had appendicitis and none of those things compare to the absolutely draining experience of those stomachaches.

Parents and doctors and professionals poked and prodded me for a couple years with no results or conclusive diagnosis. The eventual blanket verdict I received was that these stomachaches were a result of my emotions. They must have been anxiety driven. My 12 year old heart and brain were told, in effect, that I was causing myself to go through these terrible ordeals of physical and emotional distress--you hear that pubescent soul? This is all your fault.

This wasn't child abuse, don't worry. There were hundreds of people in my life that loved and took care of me. My parents, family, adults at church and in my circle were all extremely loving towards me. But the naked cold fact remained that my struggle of being thrown into daily crippling pain was my fault alone, and it was all within my control.

I was taught lamaze breathing and psychological techniques to mentally overcome the agony. I would sit in class and clench my pencil as I stared at one corner of my desk while I breathed away the pain and blinked away the black spots that filled my vision. If this was my fault, I would have to defeat it.

My stomachaches started becoming slaves to my will power. They still came, but I would tie them to a chair and beat them till they shrank into self-shaming silence. I gained control, but I started having more spells of light-headed/out of body/faint feeling where I would feel totally disconnected from my body. 14 year old me couldn't understand that when you yell at and punish somebody, they will begin to withdraw. Since I wouldn't give my body the option to hurt, withdrawing was the only choice my body could make.

It has been a journey of almost a decade and a half of learning how to suppress the different ailments of my body (I wish it was just stomachaches now) so that I didn't have to miss out on whatever was going on in life at the moment--to put my not-feeling-well into my back pocket so that I could go hiking with friends, be funny for family, and be normal for the people that love me. This sounds like a tragedy, but it isn't. After the first couple years of suppressing not-feeling-well, you stop realizing that you don't feel well.

For the past decade or so, I've felt totally fine, because I didn't realize that other people's fine was way better than mine was. It took getting married for me to realize that other people didn't feel the way that I did every day. It took somebody else's complete love and awareness of me, somebody else's "you really should rest if you feel that way" and "you really don't have to act like you're feeling well for me to love you and want to be with you" for me to entertain the thought again that maybe there was something wrong with my body--

that maybe this feeling and this fight I've been in isn't my fault.

I told RBH that the day my doctor told me I had Celiac Disease was like the day I was baptized. You never really know what living with Christ is like until you realize you've been living without Him. And that day was that for me. I had no idea that I could feel healthy--that I deserved to feel healthy.

I have let myself become aware of my body again. It is hard to start practicing self-love when you've been trained to treat your body like its the enemy. I didn't know that suppression isn't progression. Or that pain isn't bad--it is communication.

I've been learning, now, to lean into it. I don't want to tape it's mouth shut and tie it back to that old chair and tell it to "shut up or I'll make it suffer" while holding an ibuprofen gun to its temple. Instead, I pull up a chair beside it and talk to it. I look it straight in the eyes and listen. Even though it's hurt me all these years, I forgive it and I love it. And we start to move on together. 

I think a lot about my future children. I always have. I don't know why but I've always felt very connected to them--making certain decisions for them even before I know who they are. Often I think about how I want them to know that they are always the most important thing in my life and that I will always stop whatever it is that I'm doing to take care of them, spend time with them, listen to them and comfort them when they need me. I will never tell them with my actions that my "stuff of life" is more important than their well-being.

I am, in a way, already their mother, and I've already chosen things in my life to better mother them. In a very real sense, I am also the mother to my body. And I want to mother my body with the same care and attention that I will mother my children. When my body has a breakdown and starts crying out in public, falling in a flustered heap at the grocery store with tears streaming down it's innocent red face, I will not be the mother that screams back and tells it to "shut up because you're embarrassing me". I'm going to pick it up, look it in the eyes, and let it have as much time it needs to talk it out, be with me, and feel better before we move on to something else.

Mothers don't ever need to feel embarrassed or ridiculed when they need to excuse themselves from an activity because they need to spend some time with their child. We shouldn't have to do that when our bodies need some extra mothering, either. Unfortunately, the biggest critics of mothers are other mothers. People will make comments, glares, and judgments about the way you mother--whether its your children or your body. 

People will make comments like "Hah okay I get tired too, and you don't see me whining." And you just have to remember that you aren't whining, you are winning.

We live in a world that tells us we have to be more this and that than somebody else--that we have to be busy and successful in a certain accepted way. You never need to hustle for your worth. Your worth never has and never will fluctuate or become contingent on anything. It is not weakness to take care of yourself, to feel, to say I can't or I won't. It is not weakness to need. It is not weakness to choose to love yourself instead of prove yourself.

Taking care of yourself in a world that screams that you are only worth something if you're too busy to take care of yourself? That is really something.

But people will still say they have harder lives/trials/illnesses than you do. And you will just have to look back and be understanding of their need to compare because they just don't get it yet. That comparing isn't the thing. It is always destructive for both parties. It is always lose-lose. They aren't there yet, and that is okay. They don't know you or your soul. The people that judge you for taking care of yourself are most likely just trying to communicate their own insecurities, desperate for somebody to listen. They just need more love, and that's the only way they know how to ask for it.

It is like when a baby is first learning to talk (and I really don't mean this in a condescending way, because I've been this baby...just follow the comparison for a second). Babies are trying to communicate how they feel, but they don't know the words yet. They throw empty bowls at you because they are hungry, even when they don't comprehend what that feeling is.

Don't take it personally when the people around you throw their empty bowls of judgment at the soft spots in your heart.

They just don't know how else to fill the bowl, and they are starving.

No need to mend yourself, just pick up the bowl and fill it for them. Unfortunately, most of the time, when you put their filled bowl back in front of them, they will still knock it over. 

Last weekend, I was watching this woman at a restaurant with her baby. She spent the entire 20 minute meal picking her son's bowl up off the ground and placing it back on his high chair just to have him knock it back down again. Over...and over...and over. I couldn't help but wonder why she didn't just discipline him and put the bowl out of his reach so that she could be done with it. The only explanation for such behavior was that she loved him. She loved him more than self. She loved him even though he couldn't even understand or fully accept her love for him yet.

To those that struggle with physical or mental illness, to those that struggle with trials, and to those that don't:

I will always pick up your bowl. Even if you throw it at me.

Love, Coco