Tag Archives: chronic illness

The weighting game

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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.

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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.

To me, from me: six years later

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Six years ago, March 10, 2010, was the day I was diagnosed with gastroparesis, yet it would be almost another three years before the term “chronic illness” even entered my vocabulary. If I could, here’s what 2016 me would tell that 18 year old girl.

Hi Catherine,

You’ve been sick for five months now. You just got home from your first gastroenterology appointment where after taking your history, pressing on your belly and asking you some questions, the doctor wrote a few words on a post-it note, handed it to you, and then said them out loud.

Post-viral gastroparesis.

Huh? You’ve never heard of it, but now that you’re home and consulting the internet you are having a bit of a lightbulb moment. This is it! This describes what’s been happening to you! That flu you had in October seems to have damaged some of the nerves in your stomach. Who knew that was even possible? The doctor told you that these cases usually resolve within two years, so slowly you’re going to get better and better, and in another year and a half you should be good as new. For now, you have a new medication to take and some dietary guidelines to follow. Things don’t seem so bad, but my goodness you can’t imagine being sick for another eighteen months.

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Just a month or two later in New York City. Poor girl has no idea what’s coming!

You don’t even know the half of it yet. You don’t know that in three years you will be back in this doctor’s office because while things do get somewhat better for a while, they’re going to get worse. Much worse. You don’t know that this is because you have a genetic condition. You don’t know that this doctor you’ve only met once and who you find intimidating is going to become one of your greatest allies. You don’t know that you’re going to have to give up your education, your job, your independence. You don’t know how familiar the hospital is going to become or how many procedures, tests and surgeries you are going to undergo. You don’t know that eighteen months will seem like nothing when all of a sudden you’re facing the reality that you’re going to be sick for the rest of your life.

And you don’t need to know any of that right now, because when the time comes, you’re going to be okay. You’re going to have great people by your side every step of the way, some of whom you’ve met and some of whom you’ll meet in the years to come, and you’re going to make it through. So you don’t need to worry about any of that now.

You still have three years of ‘normal’ living to get through. You have three years of school, work and all around busyness to survive. Right now you only really need to know one thing.

You have a chronic illness.

I know you, so I know that you’re probably thinking sure whatever, but don’t shrug this off. This is important and you need to remember it. You don’t have, “oh it’s just a random stomach thing but I’m fine.”

You have a chronic illness.

Over the next few years you’re going to feel like you’re not good enough. You’re going to be hard on yourself for feeling stressed out by things that seem like no sweat to other people. You will doubt your capabilities, and in an effort to prove to yourself and others that you are cut out for this and that you can keep up, you’re going to push yourself harder than you should.

You’re going to feel like an outcast. You will feel left out because you won’t want to go out late at night and stay out early into the morning. You will mistake your lack of energy for a personality problem. You will find yourself wondering why you’re so boring and why you just don’t seem to fit in.

You are going to have this constant feeling of not really being understood yet not really knowing why. You are going to feel like other people just don’t get it, even though you don’t really know what exactly ‘it’ is that they don’t get. You are going to feel like things are just harder for you and then you will feel pathetic for thinking that. Life is going to be a challenge and you’re not going to know why, because right now, on this day that you received a diagnosis, you are still missing a big piece of the equation.

So let me tell you one more time. You have a chronic illness.

Please, don’t push yourself past the breaking point. Please, don’t compare yourself to other people. And please, don’t underestimate the challenges that come along with chronic illness. You have to take care of yourself. You have to let go of being perfect. And you have to listen to your body.

No one is going to know just how hard you are trying. But I know. No one is going to know the toll that life is taking on your body, not even you. But I know, because I’m paying that toll now.

Good job

As hard as the next three years are going to be, they’re nothing compared to the years that will follow and so I want you to enjoy them as much as possible! And in order to get the most out of those years you need to be kind to yourself. You need to be patient with yourself. You need to let yourself off the hook sometimes.

I know what I’m talking about here. I wish I didn’t, but I do. So hear me out, buddy. You are good enough. You have nothing to prove. And you are doing your best. You just have a chronic illness, that’s all.

No matter what happens, and no matter how overwhelmed, stressed or scared you are, I want you to know that you’re going to be okay.

We are going to find our way. We always do.

You’ve got this!

It’s not you, it’s my illness

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I wrote this piece a couple of weeks ago and then since it seemed so personal I was hesitant about posting it. Instead, I sent it to The Mighty, because naturally when you’re feeling a bit shy the logical thing to do is expose yourself to an even wider audience. I know it seems a bit counter intuitive, but it felt more anonymous that way. The response I received, though, made it clear that I’m not the only one who feels this way, and since I happen to be feeling this way today, I’ve decided to now share it here.

 

Loving someone with a chronic illness comes with some extra challenges. Illness is unpredictable, and the important people in our lives understand this. They learn to be flexible and accommodating and we love them for it.

While it might be easy to understand why we’re not always up to going out or carrying on conversations for hours at a time, it’s harder to understand why we might not want your company at all. It’s hard to understand why we might not want you to come help us around the house or give us a ride to an appointment. You’re trying to make our lives easier and we’re pushing you away. It might not make sense to you, so let’s talk about it.

Those of us with chronic illnesses are used to carrying on with life while feeling unwell. We have to, because the unwell part isn’t going anywhere.

You will see me when I don’t feel well, otherwise you would never see me. Sometimes when you see me I’ll be feeling decent enough to be cheerful and bubbly, and I’ll smile in a way that brightens up my whole face. I’ll be able to crack jokes and be engaged in conversation. Other times I’ll seem tired. I’ll still smile, but if you’re watching closely my eyes will give away my fatigue, and you might notice me sitting down or leaning against the nearest surface. And sometimes when you see me I won’t be able to fake it very well. You’ll hear me run out of air while I’m talking and our conversation might be disjointed because I’m so overwhelmed by how sick I’m feeling that I have no idea what you just said. I’ll be trying really hard to hold still so as not to draw attention to myself, but I’ll become increasingly fidgety.

And for the most part, that’s the worst you’ll see me. But it doesn’t end there. You don’t see it because I don’t let you, but it gets worse.

Sometimes I’m too nauseous to sputter out more than a few words, and I sit with my trash basket in my lap because I can’t stop retching. Sometimes I’m so tired I feel like I can’t even hold my own head up. Sometimes I’m scared to stand up or move at all because my head feels so disconnected from the rest of my body that I don’t feel safe on my own two feet. And sometimes I can’t stay still, fidgeting and squirming non-stop because I just feel so sick that I cannot even handle being in my body right then. There are times when being sick is so completely consuming that it takes all of my energy to make it through the next minute, and then the next, and I just cannot focus on anything else.

You won’t see me like that because those are the times when I try to hide away from the real world, isolating myself behind a closed door while I wait it out. Very few people see me like that because I don’t want them around. I don’t even want my mother, the person I trust most in this world, to be around when I feel like that. At times it is unavoidable if I get caught off guard or if I’m too sick to handle it myself, but I do what I can to keep that side of my illness hidden.

This might sound backwards to you. You might think that times like these are when you want people by your side the most. But no. I don’t want you to see me like that.

Part of that is for your sake. I don’t want you to feel uncomfortable, and I don’t know that it’s possible to watch another person feel so terrible without feeling uncomfortable. In the midst of the awfulness I will be thinking about how horrible it is that my illness is spilling over into your life. I know that seeing me so sick will make you worry and feel badly for me and I will feel the need to protect you from that. I will want to pretend that I’m OK for you, but I won’t be able to because in that moment I’m not OK. I will be OK in time, and I will be able to tell you that, but having to tell you that takes focus and energy, every ounce of which I need to just get through it.

And part of it is for my sake. Feeling so unwell to the point of just not even knowing how to handle being in your body anymore is a very personal thing. It makes you feel incredibly vulnerable. Exposed. Helpless. Raw. It feels like you are naked and people are staring at you but there is nothing around you can use to cover up. In that moment, your body is the one in control, not you. And that’s scary. Feeling that way is hard enough; knowing you can see me feeling that way is too much.

So I don’t always want your company, and at times I decline your help. I don’t always let you see my face or hear my voice, and it has nothing to do with you and everything to do with me and the way my illness sometimes consumes me. I promise I will gladly accept both your company and your help when I’m ready. I don’t need to be at my best, but I do need to not be at my worst.

There’s one last thing we should talk about. Even when I don’t want you there, it helps to know you will be there when I’m ready. And I love you for that. Thank you for being within reach.