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

The pitfalls of hope

I wrote this in the middle of the night a few days ago. I wasn't going to post it, because usually things I write in the middle of the night are either incoherent or excessively maudlin, but I read over this tonight and it doesn't seem too bad! Feeling way more positive now either way. 

I am sad.

That seems like a stupid thing to start a post with. My goal has always been to make this a positive place. When I started this blog, I knew I was taking something that was my own personal journey and making it public. I don't think I could have put into words at the time why I wanted to do this. I think I had an idea that perhaps it would help other people, but also the idea that it would help me too. I've always been one of those people who narrates their own life inside their head - I say that like I know for sure that other people do this. I don't really. I guess I just assume that if shows like Scrubs and Grey's Anatomy are anything to go by, there are other people out there with a voice over inside their head trying to make poignant conclusions out of the random things that happen to them. Or at the very least conclusions, without the poignance.

Right now, it's the middle of the night. I got out my computer with the hope of putting my insomnia into productiveness by working on my latest novel project but instead I ended up writing this. Because I am sad and I am frustrated and in the middle of the night there aren't that many people you can say that to.

I read something on someone else's blog recently about how the author felt she may have exaggerated her illness, not to her doctors but to herself. I do this. I think we all do this. In the middle of the night, when the pain is bad, or if my body has become rebellious in some other way, I panic. I feel that this is the end. I have lost the use of that limb, and normal function will never return.

Tonight trying to open a jar of peanut butter, left me screaming in pain. I paced back and forth in the kitchen, clutching my hand and shaking, trying to fight back the nausea and tears the pain had induced. And then I cursed myself for being so melodramatic and laughed a little too, at how ridiculous it would all look if anyone were there to see it. Eventually I managed to open the jar with a pair of scissors, which made me feel a disproportionate amount pride at my own ingenuity.

This isn't why I'm sad. The pain in my wrist eventually eased, and I could laugh at my own panicked belief that it wouldn't. I thought of the icepacks in the freezer, the splint in my bedside drawer, and all the other back up plans that I have in place but that seem so far away in the moments I need them the most.

And I started to feel a little more positive. And I started to let my dark sense of humour construct the event into a funny story I could tell someone later if I chose.

Mostly I am fine with the way things are. I was going to say I hate the fact that I'm sick, but I don't know if that's accurate. Hating something takes energy and I'm not sure I even give it that. I manage being sick. Sometimes I panic. Sometimes I cry. Lots of times I laugh about it. And all in all it's okay.

And then something happens that give me hope, and that kind of messes things around for a while. Don't get me wrong, I have hope all the time. I have hope that I will achieve things despite my illness. I have hope that each day will be a happy one. I have hope that my life will be a good one, whatever it is that that means. But I don't have hope that my illnesses will get better.

To me, having hope that my illnesses will improve or go away means that I put my life on hold. Even if it's not what I intend to do, it's what happens. Why force myself to get out of bed and do something now, while I feel so ill, when I could wait until I am well and do it then? I have to have the belief that this won't get better, because I have to believe this is my life and live it like I'm not going to get another chance.

The reason that I am sad and frustrated is that recently I let the wrong kind of hope sneak in. Even though I tried not to, I let myself believe that in seeing the specialist and having some tests done, there might be an end to my stomach problems even if everything else stayed the same. This wasn't just a naive optimism on my part; at least I don't think it was. I knew very well the tests may not show anything - in fact, I had a strong suspicion they wouldn't. What gave me hope was the assurance from the specialist that even if the initial test showed nothing, there were steps we could take to improve things. Even if the end diagnosis was not one of "disease", but just of "dysfunction without known cause" there would still be a course of action to take.

It sounded so reassuring. I felt relief that I would have a direction at last. Even if it wasn't a cure, and the likelyhood was that it wouldn't be, I would at least know what I was supposed to be doing instead of just fumbling around hoping that I at least wasn't making things worse.

So the tests didn't show anything. I was prepared for that. But I wasn't prepared for the fact that I found this out in a letter, which I didn't totally understand, and did not include the promised plan of action. I wasn't prepared for the letter to talk about "part of the bigger picture" leaving me wondering if this was a reference to my medical issues which I didn't understand, or an pseudo-philosophical comment. I wasn't prepared for the fact that I actually don't know what happens now. And I wasn't prepared for the fact that all this not understanding makes me feel stupid and scared to ask.

This is where I'm at right now. Sad and frustrated. I should say, none of this is really a comment on the specialist in question. I do wish he had phoned me with the test results, as he said he would, rather than sending a letter. I don't think I would be this confused if I had had the opportunity to get clarification, but I would probably still be sad because I had let myself hope for that "better" and that was probably never going to happen.

I do know these feelings will get better. I know I will let go of that hope I was feeling, and I'll go back to feeling okay about how things are and not trying to force them into the picture of something I wish they were. I will laugh about this, and tell stories about this. I will go back to being okay about making my own decisions about how to try and treat my diseases, and stop hoping that someone else will tell me how to handle it.

Perhaps I will post this rant on my blog, or perhaps I won't because I will decide that it's all a bit overdramatic. Either way, writing it has helped me come to an internal-narrator conclusion worthy of Scrubs or Grey's. Maybe reading it would help someone else know that it's okay to not be positive 100% of the time. And that would be another conclusion in itself. For now I will sleep, and all going to plan I will wake tomorrow with the kind of hope that is good for me. The hope that tomorrow will be a happy day, and that I will have a good life. Illness or not.

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