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
The other day I was getting on the bus (to ride the three stops from the shop to my house because I was too tired to walk) when the bus driver leapt up and grabbed me because he thought I was falling over. It was quite alarming, because I wasn’t falling over and had no idea what he was doing, but he meant well and it was nice to know that, had I been falling over, he would have been willing to help. After realising his mistake, he then took my card and tagged on for me and waited until I’d sat down before starting off. When I was getting off the bus (three stops later) he looked worried and asked if I had far to walk from there. I didn’t – the bus stop is just around the corner from home – but again, it was nice of him to check (not really sure what he was going to do if I did have far to go though?)
I was thinking about all this later. Part of me was happy to know that there are nice people out there willing to help out someone they feel is in need, but the other part of me felt sad and I wasn’t quite sure why. I, like most people with invisible illnesses, am far more used to the old chestnut: “But you don’t look sick!” Or when they see my crutch: “So what have you done to yourself?” I’m so used to people not believing me, or simply not realising, that it felt really strange to have someone notice I was struggling just by looking at me.
As I’ve got sicker, it’s become far more visible. While I’ve walked with a crutch for a long time, it’s now quite obvious that I really need it. My legs don’t always do what they’re told, and get a bit wonky-donkey when I’m walking. Tremors are hard to hide – in particular the new fun symptom of my head bobbing – and of course rashes, being pale/green and weight-loss tend to be fairly noticeable.
After a few minutes of moping over all this, I realised I didn’t care!
A few people have looked at me strangely when my head starts bobbing, but once I explain that I’m not really emphatically agreeing with them they don’t mention it again. A few days ago, I was stressing about going out to dinner because my tremors were really bad. Then I realised, no-one is going to laugh at me (and if they did, they certainly wouldn’t be the kind of person I want to hang out with!)
Being sick – invisible or not-so-much – is hard, and the majority of people get that. The ones who don’t, either just have no idea and will probably change their tune once they understand a little more about invisible illnesses. The ones who do understand about invisible illnesses and still don’t get it? Well, maybe I just don’t hang out with them :-)
Little Miss Autoimmune
One of my friends and I often talk about being in limbo. Most people have the idea that when you get sick, you either get better or you die and, though it is a blunt way to put it, for a lot of diseases this is true.
However, with many chronic illnesses, you may get better, but you don’t always get “better” and (all things going to plan) you don’t die either. You’re in limbo.
Limbo sucks.
When you’re in limbo, people will try to understand, but realistically when you repeatedly cancel plans, or straight out say no to things, or don’t meet responsibilities, they’re going to feel let down.
I sometimes wonder how much to tell people. I understand that it probably feels like a cop out if I tell people “I’m just not feeling up to” doing whatever. If I’m vague about why I’m not doing something, people may feel like I’m using being sick as an excuse. On the flipside saying “sorry, I’m not coming because everything I’ve eaten today has gone straight through me,” is more information than most people need. Often I will say no to things if I think there’s a possibility of people having to look after me. However, if I tell people this, their response is often to assure me they don’t mind. In theory, they probably don’t mind, but in reality if I fall and can’t get up, or have tremors so badly I can’t walk, or start vomiting and/or passing out it’s going to be a different story. All through my teenage years, my friends had to be prepared for the fact that every-so-often I would pass out. It wasn’t easy for them, and back then I could still get myself up off the floor easily. I want my friends to be my friends, not my caretakers.
Similarly, when people ask me how I am, I’m not sure how honest to be. We’re so conditioned to put on the “I’m fine” face, that’s it’s hard not to even when you know it’s a question not a greeting. Most of the time, making a joke of things – saying “today was decidedly lacking in awesomeness” instead of “I actually feel really awful today” – is easier. Many of my friends know me well enough to ask: “but how are you really?” if they want an honest answer, but even then it’s hard. Sitting there listing everything that’s wrong is not going to make me feel any better, and it’s a sure fire way to loose friends and alienate people.
Lately I’ve been struggling with the blues. I’m not going to say depression, because I don’t think I’m really “depressed”. This doesn’t mean that I need cheering up though. I’m okay with being a bit down. Frankly, I think it would be a bit weird if I wasn’t a bit down. Yes, I’ve been sick for years. In fact, I can’t really remember a time in my life where I had “good health,” but lately I’ve been overwhelmingly sick.
It’s probably kind of hard for people to understand, since if you saw me three months ago (or even three weeks ago) I wasn’t that bad. Things have got worse much quicker than I thought possible, but I’ve repeatedly told people “I’m okay” so they’ve every right to be confused.
Right now, all my energy is going into trying to get better. I don’t really feel like doing much else, and I know that that may result in people feeling down. Please bear with me. I will get better. Bar cures for all my diseases being found, I’ll still be in limbo, but it will be the old limbo. The one that still sucks, but at least leaves me with the energy to leave the house occasionally.
Thanks
Little Miss Autoimmune
UPDATE 13/12/12 A lot of people are finding this post looking for images of butterfly rashes (malar/lupus rash.) You'll find a picture of me with a real lupus butterfly rash photo here. I first got sick when I was nine. Not really sure what my goals were back then. I seem to remember something about wanting to be the safety pack monitor and/or bell ringer.
I was 19 when I got really sick, and was diagnosed with Psoriatic Arthritis. I know what my goals were then. I was at drama school, I wanted to do another year there and then go on to film school. I wanted to be and actor and filmmaker.
It became clear to me that I was too sick to be able to go back to drama school (at least in part when they suggested to me I was too sick to come back!) For a while I continued pursuing the goal of working in acting and filmmaking. I continued making my own films, helping out my friends with acting in and editing their films, and did a lot of extra work in New Zealand TV programmes, commercials and films (if you watch King Kong really closely, you’ll see me running around and screaming in the background.)
I’m not sure when exactly it was that I realised this wasn’t working.
I know there was the time when I sat at the computer trying to edit my friend’s film, crying because my back hurt so much. And then the film after that when I couldn’t even finish the work on it.
There was the day after my final day on the King Kong set, where I lay flat on my back wondering if I was actually going to be able to get up ever again.
There was the play, where we had to re-choreography everything between the second and third show, because I had flared so badly I couldn’t do anything we’d planned anymore.
I don’t think there was a single moment, that meant change - just a slow realisation that my earlier goals weren’t right for me anymore.
Even before I got sick, I’d known I wasn’t totally happy with the way my life was going, but I wasn’t entirely sure why. As a teenager, I’d loved spending my time acting and filmmaking, but when I thought back on it I realised it wasn’t really the acting or filmmaking that I loved. What I loved was spending time coming up with a story for a sketch or a film, or a short soap opera competition and then seeing that come to life. I realised, what I really love is storytelling and the moment I figured that out, I realised I was a writer not an actor (strangely, the head tutor at drama school spent a large amount of his time telling me this!)
In a weird way, I’m glad I got really sick at the time I did. I *might* have had a successful acting career if I hadn’t. But I would have been seriously unhappy doing it. Most of what I remember from my acting days is feeling self-conscious (largely because the tutors kept telling me I was fat!) anxious, and not good enough. As a writer, I’ve seen myself improve. I’ve seen myself succeed. And I’ve never once had a pen tell me I was fat :-P
My point is, when you get sick sometimes your goals have to change, but the essence of them doesn’t. It doesn’t mean you can’t be an actor, if that is what you want. It just happened that for me, it turned out it wasn’t what I really wanted.
Now for the shameless self-promotion:
Little Miss Autoimmune
This is me, at age nine, just before my onset of Psoriasis and Psoriatic Arthritis.
When I was nine, my parents took me and my sister to South Africa – most of my dad’s family were living there at the time. Because some of the areas we were travelling to had a high risk of malaria, we had to be on anti-malarial drugs as a precaution.
We didn’t know this at the time – and chances are even if we had it wouldn’t have changed anything – but certain anti-malarial drugs can bring out Psoriasis in people who have the gene, but no current symptoms. I say knowing this probably wouldn’t have changed anything because my mother and I didn’t know that we had the Psoriasis gene. Even if we had – the risk of malaria probably would have outweighed the risk of what we initially thought was a minor skin complaint.
When we returned to New Zealand, I fell over and grazed my leg. That in itself wasn’t anything major – except that the wound never healed. Six months later, the area that had been cut had turned into a raised scaly patch. I soon found that any broken skin did the same. Being a reasonable active (and clumsy) nine year old, I was soon covered in similar patches. This was the onset of Psoriasis.
A few months later, I developed excruciating pain in my right thumb joint. As I was at school and spending a lot of time writing, it was assumed I’d developed RSI. After a few weeks of resting it, the pain got a little better. It never quite resolved though.At the beginning of the next school year, the pain came back worse than ever and this time it wasn’t just in my thumb. All of the joints in my hands and feet were affected, and several of my larger joints were too.
I believe the anti-malarial drugs were the trigger for my Psoriasis and Psoriatic Arthritis. Ironically, these same drugs can be used to successfully treat other types of autoimmune arthritis.
As you can see from the photo, I wasn’t overweight at the time of my onset. Full disclosure – at times during my childhood I was overweight. When I was ten/eleven, I put on a lot of weight after large amounts of steroids for my asthma (those same steroids probably put my arthritis into remission, meaning my early teen years were relatively arthritis-free and I wasn’t diagnosed until age 19.)
I mention this because there has been a lot of debate recently about whether obesity causes autoimmune arthritis. My personal feeling is no, it doesn’t CAUSE autoimmune arthritis. In some cases, it could possibly be a TRIGGER or one of several triggers, but that is not the same thing as it being a CAUSE. Just as, no-one would say anti-malarial drugs cause Psoriatic Arthritis – there would be a lot of unnecessary deaths from malaria if that was the case – but for me, with my particular genetics, the anti-malarials probably were a trigger.
My autoimmune arthritis numbers are 32-9-27.
Today is World Arthritis day. If you’d like to, please feel free to share you onset story in the comments, or comment on your thoughts about the weight-debate.
Or you can post “Your numbers”
“Your numbers” are a combination of three numbers we all have:
#of (approximate) weight at time of onset - #of age at onset - #of (approximate or what everyone thinks you are) current age. So mine – I was approximately 32kilos at age of onset, I was 9years old, and I’m 27 now. Weight can be measured in any system used in the country of residence; it’s the formula that is most important. All of us have those three numbers.
If you have facebook or twitter, please post or tweet your numbers – but keep it secret! Don’t publically explain what these numbers are until the end of the day.
You can follow this awareness event Here
Thanks for reading
Little Miss Autoimmune
