Thursday, February 7, 2013

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

Saturday, February 2, 2013

Hair Loss

Some people's furniture is covered with cat or dog hair. I like to go a different route....

My hair is falling out again. After years of going through periodic hair-loss, I've got in the habit of sticking the loose hair to the shower walls, or in this case the back of the shower chair, as a way to stop my drains getting too clogged up.  I don't really think about it too much - once it's dry, it goes in the rubbish bin and I forget about it - but when I came back into the bathroom a couple of hours after having a shower this morning, I was surprised to see just how much had come out today.

I'm constantly picking bits off my clothing, and there's always a fair bit left on the couch or pillow whenever I've been sitting or lying somewhere. I've taken to wearing my hair up, as the temptation to run my hands through my hair leaves me with a handful of loose strands. For the first time, I've actually found small bald patches, as I seem to be loosing more from the sides of my head than the back.

I'm not really bothered by this. I am quite glad I decided to donate my hair, as I think this would be really disturbing if the strands were four times as long, but even with the bald patches, my hair has always been so thick, you can't actually tell the difference unless you're examining my head at close range.

I wanted to post this, because hair loss is one of those things that people don't really get about autoimmune disorders. I remember having someone say to me: "How come you're loosing your hair, if you're not on chemotherapy for cancer?" It kind of one of those questions that's hard to answer. The doses of chemo used for autoimmune disorders are significantly lower than those used for cancer, so they don't necessarily cause hair loss for everyone, but they can still have some effect regardless of what diagnosis you're on them for.

At the moment, I'm not quite sure what's causing the hair loss for me. I have recently upped my methotrexate dose, so it could be down to that, but I've also been flaring quite badly, so it could be that my body has decided to shut down anything of low priority, such as hair production, to conserve resources. Either way, I'm hoping it settles down soon. At least so I don't have to vacuum so much, if nothing else.

Thanks for reading,
Little Miss Autoimmune