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.
Finding my Miracle 
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Very familiar. Mine started with an ulcerative colitis diagnosis at 14, and proceeded up through rounds of steroids and down through not being able to eat and intense rounds of antibiotics. Concurrent puberty and chronic illness was quite a party. In the past four years I had surgery and I’ve had a 75 pound range. I have one belt I punched extra holes in and they span almost a foot. I did calorie counting for a while, but I’m lucky that it isn’t necessary so I stopped. I do my best to eat healthily within a range of restrictions. I’ve also stopped weighing myself except at the doctor. The number isn’t going to help me. Doctors ask me what my “average” weight is and I never know what to tell them. I’m 31 and I have no idea what my healthy or happy weight or shape is supposed to be. I have clothes that range from sizes 6 to 18 and never know what to discard. I’m finally getting to the point where I just consider how I feel, internally and externally, how my clothes fit. Not that that works every day by any means. It is another aspect of the total loss of control that no one except those who have experienced it will understand.
Thank you for sharing your story. I struggle with how much to share. I was going to share this on another posting of your article but I saw it’d link back to my facebook. I’m so tired to being identified solely as my illness, but more people need to know, and more people need to know they’re not alone. It’s also unnerving to think of the effect being open could have on future employment.
I wish you whatever degree of health and stabilization is possible for you, and hope you have more good days than bad.
Thanks so much Zoe – what a great way to put it “whatever degree of health and stabilization is possible for you” I wish you the exact same back 🙂
Judging from the comments, your post has struck a chord with those in your “tribe”. Those are the very best blog posts. 🙂
“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. ”
Thank you. That is exactly why the comments are so frustrating. I often say I had to give up any pretensions of self-pride in my appearance at a very young age. No makeup ever, clothes as and when they are clean and I’m lucky to have showered at all this week due to fatigue. Yet I heard, ‘wow. You look great. You’re almost half the size you were’. Yup cuz they took me off high dose steroids a year ago and that’s how long it takes to get back to normal. Like the last 10 times…. Thanks for still poking the bear!
Thanks Catherine for talking about the unmentionable.
Thank you so much for this… Your words spoke to my story as if I’d written them myself. It’s so nice to know that I’m not alone in feeling this way. Thank you.
People can say all the platitudes they want but they are rarely helpful. Why can’t they just accept and respect your feelings? Feelings do not follow any sort of logic, they just are what they are. The best support is someone who can just accept without having to argue the point. People don’t even have to understand what we are going through (how can they?) Just accept and respect where we are. I’m sorry that this has been such a tough road for you. It doesn’t matter what our chronic illness is, life would be a lot simpler if other people just kept their opinions to themselves!
“if other people just kept their opinions to themselves!” says she who leaves her opinion on other people’s blogs! ha ha! No offence intended. Hypocrisy..maybe? Passion… definitely!
Oh my how refreshing!!! I feel this way all the time!! I’m fully tube fed, can eat a tiny bit and have top ups of TPN in hospital. Although I am super skinny and know I need to gain weight I don’t necessarily want to, as it’s not in my control. Before I got sick I was 150lb and I was happy with my weight. I ate well, was obsessed with my push bike and was a happy 35 year old. Now I don’t have the energy to ride my bike. I get only 900-1000 calories a day as I’m unable to tolerate anymore. I’m 105lb, skin and bone with flabby skin. I get told all the time “there’s nothing to you!!”. I’m always worried my health team will wonder if I have self image/body issues to be honest, I don’t really want to gain too much, mainly because I have no control over it. Thank you so much!!!
Yes it’s very unnerving when the numbers start going up and you don’t have any way to stop them! I’m lucky now that with my TPN I can be really open and honest about everything and one of the main considerations they make is if I’m happy with my weight. I think explaining where we are coming from helps…or at least I can hope it does 😛 Good luck to you with your own nutrition struggles!
I feel it. I gained so much weight, it has been hard. I didn’t want people to see me. I’ve last some, but I’m not back to a good weight for my frame. It’s hard. I can’t exercise, how can I lose? I eat well. Or I try. I have Malabsorption of certain foods. It’s hard to eat around that, especially since hubby cooks. The weight game is hard. I could say more, but I won’t. May we both be comfortable in our skin.
“May we both be comfortable in our skin.” So perfect. Here’s to enjoying our picnics despite all the ants 😉
Oh yes, I get it…
I sort of get it, I think/a bit- owing to a stupid & inconsiderate doctor (& my own noobness at the time), awhile ago I gained 7kg in 3 months (?! That’s abt 15 pounds/I think?) being on meds for generalized anxiety – yes how fun, in addition to hydro I have a stupid anxiety disorder. Huh – sometimes I think GAD is worse because mental health struggles are that invisible but I digress ..
The details of how I ended up that way are a bit foggy now (partly cos I was in such a bad state then I was too anxious to remember anything properly, partly cos well I suppose my brain probably wanted to block out the horrid experiences of this trashy doctor) – but it’s something like, he felt that since I was taking an SSRI AND a benzo (2 types of mental health treatment meds), that I ‘might as well’ combine them by taking the pill of all horrors, Mirtazapine. Who even does that, I mean don’t (most proper) doctors prescribe combinations for a reason, what a lazy prick ..
Guhhh it was horror because it controlled my weight, sleep (adjusting to it was BAD. Getting off it was WORSE. Dayum) & along with that, how these issues impact/ed my self-esteem I suppose.
Like I had to buy clothes a size bigger cos I was bursting out of my normal clothes – I still have these dresses a size larger today(!), just because you don’t simply throw away a $50 dress. But it’s weird, they’re big and spacious now and .. well I just ise a belt. But it’s still a bit strange .. like a tangible somewhat reminder of Then.
& people (out of genuine concern mostly) kept commenting how much weight I’d lost, after I changed docs (hur, the irresponsible one left without even telling me – I only found out when I wanted to reschedule my appt & so I called) & pleadddded with my new one to get me off Mirtazapine. She too was convinced I was being all young lady for a bit (‘when you’re my age such things don’t matter’, she said) but I suppose she grew to realise why/how I was so affected by the whole deal ..
So yeah let me just say that when you lose weight suddenly (& you’re acutely aware that amounts to 15 pounds or something) & people tell you about it – I don’t know how other people react, but with GAD and having said weight gain caused by factors out of my control, having to acknowledge such noticeable weight loss wasn’t quite the compliment. It was more like ‘THEN HOW HUGE MUST I HAVE PRIOR BEEN for the weight loss to be THIS noticeable ..?’ Not very fun when that’s the first thing your acquaintance-level colleague says (my weight is not yr business), & makes the assumption it’s a stress-induced weight loss. Or when a friend comes back from abroad & the first thing she says when you meet is ‘oh whoa, you lost weight!’ (no ill intentions but still 😒)
… so yeah. I don’t really know what you make of my sharing this (!! I commiserate – but am not sure if I inadvertently appear to be all ‘misery loves company, join the pity party’ .. which if so, is NOT INTENDED & I apologise ..!), but it was, I suppose, to attempt to illustrate the perspective of someone who experienced something somewhat similar albeit by a different condition ..
xx
Yes I think whether weight is going up or down or whether it’s another physical change entirely, the lack of control is a common element threaded across illnesses. Thanks for sharing your side of things 🙂
YES YES AND YES. Perfectly put Catherine!
Here’s to going through puberty for the rest of our lives 😉
Oh my…speechless…you put my own life game to excellent words Thank you so much
I’m glad that, because of my ex-girlfriend, I understand what you’re saying and can hear it with compassion. I don’t mean that “I know how you feel,” of course. But I am capable of understanding what you’re communicating. You have a compassionate listener.
And thank you for that compassion. You also raise a good point – the difference between understanding what someone is saying and knowing how they feel. I just appreciate the understanding at all!
Not saying anything, just trying to send love and understanding and grateful for your ability and courage to voice what is happening to you
Thank you Angela – such an understanding and great comment. Thanks!