Body Image Part... I don't even know anymore

Photo credit Travis Cottreau from Poetry in Motion

Last year I posted over on the Little Miss Autoimmune Facebook page about how starting a new medication had helped me get some control over my stomach issues, and as a result I’d been able to regain a kilo and keep it on for a couple of weeks. This seemed (at the time) to signify my stomach problems were a thing of the past.

Well, that’s the problem with counting milestones when it comes to chronic illness. There’s no end point to these diseases, and as such everything is changeable. The good and bad states are only ever temporary… a fact that can be both a source of comfort and a source of fear if you let it. Not long after posting about that kilo weight gain, I re-lost it… and five others.

Despite this, last week I realised I’d come to a good place with my body image. I felt like how I saw myself in my mind was starting to match up with what I saw in the mirror and in photos, rather than my real image being a constant surprise after all the changes my body has been through. More than that, I actually felt I liked the way I looked – when a friend complimented me on a photo someone had posted, I could think “yeah, that is a nice photo” rather than immediately assuming they were saying that to make me feel better about what must actually be a bad photo.

Then in the way of life: Happy with your body image? Enter chronic illness.

Since that photo was taken, I’ve lost three kilos – enough weight that I’m going to need to get a belt for my jeans to avoid accidental indecent exposure. It was only a week ago. The day this photo was taken, I’d seen my doctor about something unrelated and happened to mention that I thought I was losing weight again, so she got me on the scales. In the week since, things went from “I think I might be losing weight” to “I’m so sick I must have food poisoning” to “how can food poisoning last this long…? oh wait, it’s a fricken' flare.” I hate that after all the years, medication, attempts at alternative therapies and diets, this is still happening. I hate that it happened the moment I started to feel good about myself, and I hate that I still feel like I’m going to have to justify to people why this isn’t a good thing.

Maybe that last part is in my head. The people I’ve mentioned the weight loss to, all reacted with variations of “oh, that’s not good” so perhaps people won’t assume weight loss at any cost is a good thing (or perhaps I just have all my friends well trained!)

I hope that I can continue to feel good about myself, even if my body changes again. The weight loss this time probably isn’t significant enough for me to actually look any different, however, the last couple of days my thought process has been something like this: “Maybe I should try eat more, so I don’t lose too much weight. But what if I over-shoot and start gaining weight? Really Helen? Are you actually worried about that right now? But if I lose too much weight, I’ll probably look really weird. Wait… Are you actually thinking this? Are you really simultaneously fat and skinny shaming yourself, while buying into superficial garbage about your appearance instead of concentrating on your health? What is the matter with you?!”

The reality is, I cannot control my weight right now. All I can do is eat whatever doesn’t make me feel sick, avoid foods which I know make the weight loss worse, and just hope that at least some of what goes into my stomach actually gets absorbed. Like all the illness stuff, this episode will be temporary. There’s a really good chance the weight I’ve lost will come back on once my stomach settles, and I’ll be back to where I was. I just hope that whatever happens I can feel okay about it and stop placing so much importance on a number on a scale. Weight gain or weight loss, I know very well that if this was happening to a friend, I would be assuring them that they are worth so much more than that, so I’m going to try show myself that same kindness.

Thanks for reading, 
Little Miss Autoimmune

Body Image Part Two

A while ago, I blogged about the reactions people have to the weight-loss I’ve experienced with my diseases. In the year since I posted this, my stomach problems have gotten considerably worse, and I have continued to loose weight. In the last six months alone, I have lost around 15% of my body weight.

I get a lot of comments on this. The comment I hate the most “It’s good to see you looking so healthy.” What this actually means is: “it’s good to see you looking thin.” If you are reading this, please understand there is a difference between the word “Healthy” and the word “Thin.” Please try not to use them interchangeably, unless you are absolutely sure that this is the case.

It’s hard to explain to people why this is a problem. I’m sure many people would think loosing a substantial amount of weight without having to put any effort in would be a dream come true. I was quite overweight to start with, and so from many people’s point of view, this is a good thing. Though I am considerably smaller than I was, I'm not actually underweight, so from the outside I probably do look healthy.

I’ve made a point to react to these comments with an explanation of the fact that this weight loss is in fact not healthy. I’ve refused to accept compliments that include mention of my weight, nor any praise about the weight loss. This reaction baffles people. They cannot understand why I don’t just accept their comments. They often become more insistent, assuring me it doesn’t matter that I’m sick because I look so good now.

It’s an effort for me have these conversations. It would be so easy for me to just say “thanks” and let them think this is a good thing, but I don’t deserve praise for this. Loosing weight to improve your general health is usually something people have to dedicate time and effort to. That hard work (if done healthily) does deserve praise, but I haven’t done any of it. I strongly feel that if I don’t refute these comments, I am contributing to the body-image problems so so many people struggle with. If people believe that my experience is “worth it” it’s not a big leap to saying that recreating that experience with a box of laxatives or intentional vomiting is also “worth it.” It’s not. It’s dangerous, and no-one should ever be made to feel so bad about the way they look to think that this is a solution.

This is a hard post for me to write. When I posted about my weight the last time, I was very clear in how I felt. In the last few months, I’ve felt my own body image getting distorted. It takes me longer to get ready in the morning, as I find myself standing in from of the mirror feeling unsure of myself. I find myself plucking at my stomach and thinking “if I just lost a little more.” I’ve had thoughts of not wanting to get better, because then I’ll regain the weight, and that little voice creeps in saying it’s “worth it.”

It is not worth it. I saw my GP on Tuesday, and she was very concerned by the symptoms I described. She immediately referred me to a gastroenterologist, and said it was important that I go privately, as the hospital system will take too long. In fact she was baffled that my rheumy hadn’t done referred me already, but that’s another story. In the past she has celebrated any weight loss with me. This time, she could tell as soon as she saw me that the weight loss was not normal.

This weight loss comes at a high price. My hair is falling out, my skin is gross, and I have to plan my days around the times I know my stomach will be at its worst. Sometimes it changes its mind, and I am running back and forth to the bathroom all day, unable to leave the house. I often wake several times a night because my stomach hurts, and I get hot flushes and dizzy spells every time I eat. Most of all, I feel really really sick.

For me, feeling good is more important than looking good, but I realised something significant the other day. I actually didn’t feel bad about how I looked before anyway.

Thanks for reading 
Little Miss Autoimmune

Body Image

When it comes to having a healthy body image, I think I’m doing pretty well. Yeah, I know, it seems unlikely since hardly anyone out there is actually happy with their body. Sure, I have moments when I wish my hips were smaller or my boobs were bigger, and there are certainly still a number a photos I delete for having too many chins – but they’re just moments. Most of the time I’m happy with the way I look. Most of the time the time I think my boobs, hips and chin(s) are fine just the way they are.

Being sick affects my weight in quite dramatic ways. When my joints were really bad, I gained a lot of weight from inactivity and steroids have the fun side-effect of making you want to eat everything in sight. With coeliacs, I’ve been known to loose five or six kilos in a few days if exposed to hidden gluten, and my nausea can get so bad that I just stop eating.

One of the strange things I’ve noticed about being ill is that the days I feel the worst are often the days when people tell me I look good. For a while I thought maybe The Universe was being kind and just trying to make me feel better, but then I realised there are reasons why I get compliments when I’m sick. As my doctor said to me today, the version of the butterfly rash I get is actually a fairly “pretty” one, and when I’ve got it only mildly it’s usually mistaken for “rosy colouring.” I’m not a huge fan of make up – largely because I’d rather sleep an extra half hour than wake up to “put on a face” but if my skin is particularly rashy or I have huge dark circles under my eyes, I’m more likely to make the effort. Similarly, if I’m loosing my hair from illness or meds, I make the time to go to the hairdresser to get it tidied up or spend more time at home trying to make it look presentable. I live in Wellington (a very windy city) so on most days I go for a convenient but not-terribly-flattering bun hairstyle, but if my back and arms are flaring, I’ll wear my hair out.

And then of course there’s the weight loss.

A few years ago, I was on a combination of medications that really did not work for me. My kidneys stopped working properly and my blood pressure skyrocketed. I wasn’t nauseous but I wasn’t hungry EVER. I got palpitations, couldn’t breathe and passed out every time I climbed some stairs or even just took a shower. It took months for kidneys to come right and by the end of it all, I’d lost A LOT of weight.

I was in the supermarket few months later, and ran into someone I hadn’t seen for a while. She commented on the weight loss, and when I explained what had happened she joked: “Oh, what’s the medication? I need that kind of weight loss.” More recently, someone commented on how good I was looking lately then added: “almost worth having lupus.”

Um.... exactly how fat and ugly was I, that it’s worth having lupus to look “better”?!

These kinds of comments upset me. Yes, I know they’re jokes. No one really wants their kidneys to stop working, or to be diagnosed with lupus so they can loose a bit of weight, but it still frustrates me because it comes from a mentality of: Skinny is always healthy. Even more so: Skinny is always better. I hate this mentality. This mentality says it doesn’t matter how bad you feel, or what torture you have to put yourself through, as long as you’re thin at the end of it. This mentality says looks are more important than health. This mentality invariable says: You are not good enough.

I refuse to subscribe to this. I am good enough whether I am overweight, underweight, or somewhere in between. Most likely my weight will continue to bounce up and down as medications and illness wreak havoc on my body. Yes, I will probably lament any weight gain – I won’t lie and say it doesn’t upset me. That does not mean I will celebrate any weight loss if it comes at the price of me feeling like utter crap.

What I will celebrate is any signs of returning to good health, whatever weight it comes at.

Thanks for reading

Little Miss Autoimmune