Real quick, before I begin…
Shoutout to folks on meds that had unexpected and undesired side effects.
Shoutout to folks who gained weight as a side effect and had to get new clothes.
Shoutout to folks who got worse fatigue and needed to slow things down a bit.
Shoutout to folks who ended up with tremors or shakiness and are embarrassed by it.
Shoutout to people struggling with any side effects, seen and unseen.
Shoutout to all of you who are affected both negatively and positively by your meds. You’re beautiful, despite the side effects. You’re enough. You’re enough. You’re enough.
Links about building body positivity
- Body positivity 101
- Body-positive mantras
- Body positivity tag on my Tumblr and on Pinterest
- Cripple punk (disability-specific body positivity)
- Fat-positive body positivity bloggers who fight fat-shaming
- 10 steps toward positive body image
- “Jessica’s Daily Affirmation,” a precious YouTube video of a young girl who loves her body and life
- Measure of Body Apperception (MBA) Scale and Self-Compassion Scale to help you understand where you score on self-kindness
- Eating disorder recovery tips and general chronic physical illness and mental illness recovery tips
- Carol Rossetti’s body positivity artwork, like the piece below
Now, onto the promised content. Trigger warnings for weight/size mentions, food and calorie mentions, and before and after-style photos.
Maybe, somewhere in these words, you’ll find something that helps you on your journey to peace with your body, whether it’s riddled with chronic health problems or entirely healthy, because body positivity is hard, no matter who or where you are. This task of learning to have good body image in a body that’s not entirely under my control is a process, and I’m nowhere close to being done. However, I want to share what I’ve been coming to in my mind and in my conversations with my therapist.
I used to joke that my body positivity as someone who lives with multiple debilitating chronic health conditions was being able to say, “I like the way my body looks, just not the way it functions.” However, as I’m learning from some hard-fought experiences recently, this was a truly privileged thing to be able to say. Research confirms that many people with chronic health conditions struggle with body image more than their healthy peers do, and recently, I’ve been fighting with mine. I’ve been thrown for a loop due to the reality of taking medications with weight gain side effects, losing my “I can eat 5 desserts a day and not gain weight” metabolism from my teenage years, and growing into a more mature body after being rail-thin from late elementary school to early college.
I grew 9 inches in 4th grade, and from there, I spent a decade being thin enough that many people asked me in hushed, yet slightly aggressive tones if I had an eating disorder – especially if they watched me eat, without any hesitation or fear, way over 3,000 calories a day. (My guess is that it was more like 3,500-4,000 on an average day.) No, I just had the metabolism of an athlete, even though I barely exercised.
I finally started growing into my more adult-looking body when I was around 19, and from there, I started gaining weight pretty consistently. I was joyful to no longer have my ribs be visible, and I didn’t mind any of the weight gain. In fact, I barely paid attention to it, except when at doctors’ appointments vitals checks. It was making me look like a mature woman after all of the years when I wished I could look anything like the women in my family, who were… quite differently proportioned than me. Yes, I was growing out of some of my old clothes, but I was growing into some exciting new clothing options that I hadn’t had before, and it wasn’t at a pace that seemed unstopping.
Over the next 3 years, I finally got diagnoses for the chronic physical and mental health problems I was struggling with, and I began to be medicated and start to feel at least somewhat better in many ways. Somewhere along the line, taking these medications, changing my diet, beginning to exercise, and continuing to mature into my adult body, I gained more than 55 pounds from my high school weight and I grew out of all of my clothes. Practically without even noticing, I had grown from a small to a large, a size 4 to a 10 or 12, and into a body that would not be classified anywhere as underweight – even moving from a 6-pack to a bit of visible stomach fat. That’s when I became a bit uncomfortable with my body’s size for the first time in my life (in a higher weight direction, that is; I had been quite uncomfortable with how thin I was when I was younger), and realized I wanted to stop gaining weight (so I could, you know, not grow out of the new wardrobe I’d be buying myself). I came to the reluctant realization that I would need to pay a bit of attention to how much I ate for the first time in my life in order to achieve that. I started feeling weird about my body in a way that I’d never felt weird before because of my personal history with being underweight.
More importantly than the weird feelings I’m having about my body sometimes, I want to share the authentic and even beautiful realizations that this strange time has brought me to.
I’m now realizing that some of the reasons I was so thin in my teenage years likely relate to the kinds of foods that I was eating and the heart problems from dysautonomia that I was beginning to experience. Firstly, when I was diagnosed with fibromyalgia, I was advised to try eliminating gluten and dairy and seeing if that affected my pain. I was shocked by how noticeably it improved it, especially with dairy, and even more so, how much it improved my lifelong stomach issues. It’s likely that I wasn’t getting enough nutrients during my teenage years because food would go through my body too quickly. (Sorry for the TMI. It’s true, though). Now, when I follow my dietary restrictions, I actually digest food well, and my stomach doesn’t hate me (as much). Secondly, I also was likely dehydrated pretty constantly. One of the descriptors for the kind of postural orthostatic tachycardia syndrome (POTS) I have is “hypovolemic,” meaning that I have naturally too-low blood volume. When I went to Mayo Clinic, I was formally diagnosed with POTS and was put on medications to help with water retention and vein constriction to that my autonomic nervous system wouldn’t feel as much a need to pump my heart so hard to get enough oxygenated blood where it needed to be. These medicines have well-known weight gain side effects (as do the psychiatric medications I’m on to help me live as stably as possible with mental health conditions). Due to the POTS medications, I feel so much less light-headed and have less trouble standing, walking, and thinking clearly. When looking at it that way, why would I ever want to go backward?
I need to keep moving in the direction of health, and that is so much more important than a vague notion of wanting to fit in clothes from earlier in life or have a 6-pack again. I am dedicated to learning to love the shape of a body that feels better than it once did, rather than engage in bad eating habits or avoid medications that help me thrive, whereas before I just lived. This same thought can (and perhaps should be) true for people who are facing similar thoughts about a body that they cannot completely understand, control, or feel like they can accept: For people with chronic pain conditions who choose to use mobility devices to help themselves move more freely and painlessly in the world; with gastrointestinal conditions that caused a need for G-tubes or J-tubes; with large visible scars from surgeries or other reasons (I have a pretty cool one on my back from when I got a pre-melanoma removed); and so on. Though my body is deeply imperfect and filled with health issues, it can do so much, still. It takes me hiking. It brings me on the elliptical. It allows me to stand in front of a crowd and sing or speak. It laughs, cries, and lives wholeheartedly. It types, holds books, and makes music by pressing piano keys. It drives me to school, where I have the privilege of being a full-time grad student of divinity. My body’s functioning is far more important than its appearance, and that is true even though my body’s functioning is far from ideal. Even if my body could do none of these things, it would still be beautiful. My worth is not performative, and even enough I deeply wish that I had a different and better functioning body, its worth is not performative either.
Y’all, I’m not going to lie: It’s not a perfect process. Every time I tried on a piece of clothing (whether one of my older pieces or a cute possibility in a store) and it didn’t flatter my newer shape, it sucked and it made me feel like I was going backward rather than forward. It’s been really weird to watch what I eat for the first time in order to assure myself that I won’t grow out of the clothes that I just spent a good chunk of change and time (countless hours peering at the clothing racks in Marshalls, TJMaxx, and thrift shops) purchasing. However, my therapist encouraged me to start small, gentle, and broad rather than focusing on calorie counting or anything more intense in the same vein (since I have a tendency to be… kind of intense). The closest thing to calorie counting I decided to do was to look up my basal metabolic rate to see the approximate calories that I can eat, based on my age, height, weight, and activity level, and expect not to gain weight. It was more than I was expecting – score. My therapist also encouraged me to look up appropriate portion sizes (I found this handy wallet-sized guide) so I don’t overeat a ton by accident, and to write a list of some obviously “bad” and easy-to-target eating habits that I have. It doesn’t have to be intense for me to try to achieve the simple goals of not growing out of another set of clothes and continuing to find my way to peace with my body’s functioning and appearance.
I hope that these thoughts have been helpful for you in some way. I’m figuring my way out, and maybe you are too.
7 thoughts on “Living with Chronic Illnesses and Working Toward Body Positivity”
It’s amazing what the body goes through when we’re sick. It’s been about 4 1/2 years since my surgery and even though I’ve gotten used to how my body looks after having the tumor and leg muscle removed, it’s just like you said, it’s a process. My weight has been up and down with all the meds I was on and from being in bed for so long. It’s not easy to get used to what you have no control over. Reading other stories helps. Thanks. Great post!
I’m honored that I could be of help. Thank you for sharing a little piece of your own story with me!
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Thank you for your raw honesty- this will touch many people! I am like you in your teen years, I cannot gain weight and I would really like to. I having been trying for the past 10 years since my Crohn’s diagnosis. Right now I am trying certain foods and exercises to see if that helps.
I hope there is tons of healing in your future! 🙂
Thank you for your kindness, encouragement, and vulnerability!
Just want to say that your post resonated a lot with me. I also have fibromyalgia (diagnosed at age 11) and was diagnosed with celiac at age 17. I actually just wrote a similar blog post about learning how to love your body with a chronic illness, so we must be on the same wave length 😉 Sending lots of healing and loving thoughts your way! And it is AMAZING how much going gf and dairy free has helped me fibromyalgia pain (though I changed my diet due to my celiac diagnosis).
Oh wow that’s wonderful!! It’s always an honor to hear from people who resonate with your story, so thank you so much for that!!! Sending you all the spoons.