I’ve written a number of times about the waiting game that those of us with chronic illnesses play, but today I’m talking about its homophone.

The weighting game.

I feel like I need to add a million disclaimers to this post. Weight is such a sensitive subject for so many people so let me just say that I can’t know what it’s like for everyone else, but this is what it’s like for me. And I know I’m not alone.

Since I first got sick six plus years ago now, I feel like I’ve slowly surrendered more and more control of my body. At first it was just little things. A few vials of blood. A camera down my throat. A tube in my abdomen. Now that I rely on TPN, there is a team of health care professionals who determine the exact number of calories and the exact volume of fluid I receive every day. Without my central line I have no way of getting the nutrition I need. This means that unless I lie on a table wide awake and naked from the waist up while some strangers dig around in my neck and chest, I don’t get that nutrition. And when something goes wrong with this line I don’t get to eat, sometimes for days, until someone can fix it.

I’m not telling you all this so that you’ll feel sorry for me, rather I just want to describe a reality that may not be familiar to you, a reality in which your body is not entirely your own. Even though this reality is familiar to me, there are still times when that lack of control can be really unsettling. Weight, for instance.

I know weight fluctuations are very normal. Healthy people aren’t the same weight every single day, rather bodies have a range of average, day to day weights. Chronically ill bodies are the same. I’ve been a couple pounds up and a couple pounds down countless times over the years, but I’ve also had some pretty radical weight changes. When I first got sick I lost 25 pounds in a matter of months. After I got my feeding tube I gained 25 pounds, also in a matter of months.

125 pounds. That’s what all of the big swings up and down in my weight since I first became sick add up to. 125 pounds. And I had no control over any of it. It had absolutely nothing to do with lifestyle, and everything to do with an illness that was out of my hands.

Let’s try and make this relatable.

Do you remember how awkward and terrible puberty was? Do you remember how uncomfortable you felt? How foreign your body seemed to you? I’ve basically been living through that again and again for the last six years.

I can honestly say I didn’t like the way I looked after losing all that weight, and I am genuinely happy not to have a BMI below 16 anymore, but that doesn’t mean it wasn’t unnerving to watch the numbers on the scale quickly climb 25 pounds and it doesn’t mean I didn’t feel a little fat when I couldn’t button up my pants.

But I could never express any of that because for all the years I’ve been playing the weighting game I’ve also been continually worried about being labelled with an eating disorder (another very serious medical issue but one that requires different treatment than a GI motility disorder). It’s a justified worry considering that it’s happened multiple times. Believe it or not my surgeon once actually withheld necessary medication in the hospital because of that misjudgment.

As soon as you’ve been underweight because of a GI condition, it feels as if you are never allowed to have your own opinion about your weight again. You can be unhappy that you’re underweight, and you can be pleased that you’re gaining weight, but that’s it. Everyone else in the world is allowed to want to lose a few pounds, but not you. Everyone else in the world is allowed to be uncomfortable with rapid weight gain, necessary or not, but not you. You’re just supposed to be glad that you’re “healthy” and if you seem anything but people start to get suspicious about what’s “really” going on. Even if you find yourself overweight because of your illness, you’re not supposed to worry about that and instead just focus on the more important things like keeping your symptoms under control. You can’t win.

It’s not just GI conditions. The weighting game is played by patients will all sorts of diagnoses for all sorts of reasons. Medications, steroids, nutrition, mobility issues, metabolic disorders. Any number of factors can cause the numbers on the scale to bounce all over the place.

Okay, now back to puberty for a minute. Do you remember how embarrassed you felt when adults in your life would comment on “your changing body” and how those words made you cringe? Ladies, do you remember how you blushed when people noted that you were filling out or gave you that all-knowing smile as they talked about how you were becoming a woman? All you wanted was for people to stop looking at you and let you be. Remember that? Okay, well for all the times I’ve lived through puberty again and again thanks to gastroparesis weight changes, I’ve relived that awkwardness.

Just because I needed to gain weight doesn’t mean I wanted the whole world watching me while I did so. Constantly having people comment on your weight can honestly be very hard to deal with. And I know all the comments were intended to be supportive and encouraging, but that doesn’t make them okay.

We don’t just go up to people and say, “Oh hey! You’ve gained weight!” And if we’re trying to compliment someone or tell them they look healthy we never use words like pudgy, chubby or plump. We just don’t, yet I’ve lost count of how many times I’ve heard all of those things. So not only does it feel like you’re never allowed to have an opinion about your own weight again, but it feels like the rest of the world has an opinion about your weight and you’re supposed to just smile and thank them for sharing it with you. You know, since it’s a compliment.

I’m sure what I’m saying here could be extrapolated to make a statement about society, culture, beauty standards or something along those lines, but I’m not here to analyze that. I’m here to offer you my shoes to walk in and to talk about something that others with similar shoes and I don’t often feel we can talk about.

Confession time. Do you know what I did last weekend when I stepped on the scale and realized that I’ve gained 10 pounds in the last 5 months, and that even though we adjusted my TPN my weight is still going up? I cried. I don’t cry very often, and I honestly can’t remember the last time I did, but over the weekend I dissolved into a puddle of tears. Twice, actually. It’s not that I’m unhappy with the way I look, it’s that the way I look is not up to me. The way I look is determined by illness, medicine, science. And the way I look is not necessarily a reflection of the way I feel, a truth that I feel I always have to justify.

So I cried. I cried because I have no control. I cried because my body is not my own. I cried because I’m so ridiculously done with finding that my entire wardrobe is all of a sudden too big or too small. And I cried because I hate that I let this bother me. I hate that I care about what I look like or about what others think. But I do. I feel like with everything else I’m dealing with, something like weight should be trivial. But it’s not.

I cried because I’m tired of playing the weighting game. And because I’m tired of it being a spectator sport.

Self-image is not just about how we look, it’s about how comfortable we are in our skin. But it’s hard to feel comfortable when you don’t feel in control, and for so many of us with chronic illnesses that is the position we find ourselves in. We’re stuck in these bodies that not only don’t work the way they used to, but also don’t look the way they used to. The more that illness and everything it comes along with takes over your body, the less it feels like your body anymore. It’s a challenge to feel comfortable in your own skin when your skin no longer feels like your own.

Appointment time, where waiting game meets weighting game.

I didn’t write this because I need you to reassure me that I look fine or healthy. Please don’t tell me that I’m not fat or that I shouldn’t care what I look like. I don’t want you to tell me any of that because I know all of that.

I wrote this because this isn’t something that gets talked about. Because there are others like me, living in bodies that have been changed by illness, who are tired of feeling like their body is on display, not just to the medical world but to the rest of the world, too. For so many of us the weighting game is one we will continue to play throughout our lives against opponents we have no control over, and for medical reasons, we have to keep score.

Please, just respect that it’s a closed gym.