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How to Love Your Chronically Ill Body When It's Caused So Much Pain

We don’t exactly live in a society that makes it easy to love our bodies. Having a chronic illness, in which my body is a source of pain, fatigue and uncomfortable experiences, can make it even harder. Sometimes it feels as if I am in a repetitive struggle with my own body.

Having a rare disorder, very long chain acyl-CoA dehydrogenase deficiency (VLCADD), a condition that prevents me from converting certain fats into energy, I have always had a tenuous relationship with food, exercise and what “being strong” really means. My disorder often makes it difficult to exercise, especially when I am struggling with muscle breakdown. My diet is a low-fat, heart-healthy diet, but when I am ill, since I cannot break down fat property, I must take in additional sugars and carbohydrates to stop my system from breaking down muscle and releasing the remnants into my bloodstream.

It seems like every time I get back into exercising, moderately, but regularly, and eating a balanced diet, I become ill and must revert back to limited physical activity and carb-loading. The few pounds I may have managed to lose return. And more importantly, my feelings of strength diminish. As a generally active person who has trouble sitting still, my confidence wanes when I am limited in my activity, but it is what I must do to heal. Accepting that I sometimes have to do what is viewed as “unhealthy” to become healthy again can be difficult. Afterward, I am left rebuilding my muscles–sometimes starting where it seems I have left off. I lay up at night worried that my muscles will be permanently damaged or weakened by these episodes I have.

I have always struggled and worked (almost obsessively hard) to not gain too much weight. During my teenage years, I was especially sensitive about it. Most of my friends had petite, athletic frames that were constantly able to be toned with their three-sports-per-year schedules. I was lucky if I could get through one sports season without a major incident. While they were all able to eat piles of french fries and mozzarella sticks, I was always scrambling to find something on the menu that wouldn’t make me sick (or didn’t and received the consequences).

As I moved in to adulthood, many of my friends started on keto or full-fat diets, where carbs were “the devil.” I then had to move in to a new stage where I had to learn to explain how those diets would literally kill me without coming off as that obnoxious naysayer friend. While they were all comparing the menu for the lowest carb option, I am over in the corner grabbing a bagel and loading my Gatorade with extra fructose (fruit sugar) if I was not feeling well.

I once took a class in college in which one of the topics explored was how food is both cultural and social in nature. At first, I was a little skeptical, but as we started discussing it more, I realized how much truth there was behind it. It had played out in different ways my entire life, even within the microcosm of my own family. I grew up in a family of chefs trained in traditional French cooking. Many of them love meats, sauces and butter — all the things which I could not eat. I was lucky though because my parents always took it as a challenge, creating lower-fat versions of their traditional favorites to share as a family, but regardless, the food you do (or do not eat), especially since food is such a social experience, can make you feel different.

“It is always something.”

That is perhaps one of the hardest parts of living with chronic illness. There are less days I feel amazing, where nothing hurts, than there are days where multiple body parts hurt. The worst days I actually feel like my body is running on empty (or below the empty line). Having to find ways to feed it and finding the exact balance of how much you can fit into the day without completely wrecking myself is in itself a full-time job. I often resent how much of my time and energy it takes away from other things in my life.

I know it makes absolutely no sense at all, but when I do cave to the anger, I get angry at my body, for not holding up, for being dysfunctional or all-together broken, for not being stronger or for failing me. The worst part for me is that my body and my being often become intertwined, so I am essentially blaming my body and labeling myself as a failure, for my illness.

I have grown a great deal in accepting my illness since learning this. I have had to learn that despite what anyone or anything says my worth is, it is more than how mentally or physically “strong” I can am at any given moment.

What I give to the world is not measured in the inches of my waistline, the number of the times I go to gym,  the number of parties I am able to go to or the pounds I am able to lift.

Regardless, those things, if and when I do them, should not be up to measure for anyone else but for me.

When I look in the mirror I see all the imperfections. Now that is not meant to be a negative, but rather the opposite. I see every bump and bruise and extra pound or the dark circles under my eyes — and in that, I see the fight.

Every day, when I look in the mirror, I don’t always see the skinniest, strongest, coolest person, but most days, I do see a person I can be proud of, who despite all the obstacles and limitations, has kept myself going and tried my best to also lift others up.

Our worth comes from the moments in each day that we fight, that we wake up despite the pain and frustration and sense of defeat and live life to the best of our ability. On most days, our “living” probably looks a little, or maybe a lot different, but it is still living. It is a different kind of strength and love for one’s body and self.

I know it may be cheesy, but one exercise that really helps me on a rough day or the end of bad episode is washing away the negativity, pain and anxiety–literally. After a painful visit to the doctor or a rough hospitalization, I stand in the shower and I try to imagine that all the hopelessness and unknowns I fear most are washed down my body and into the shower drain, so I can start anew. I scrub off the hospital tape “goo” and push forward to live another day my way, in my body.

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