Living with a disease

Language is a funny thing. We use it every day to communicate with each other, and there are many nuances to the way we use various words. Some words are simple and inherently positive (such as “health” and “happiness”) although some (e.g. “gay”) have taken on extra associations over time. Other words have negative connotations: sometimes subtle and sometimes not.

Yes, this post is all about language, and doesn’t mention technology so much. But it is relevant.

Deformities

Imagine you’ve grown up being familiar with the shape of your feet (with bony heels that you need to be careful about finding hiking boots that fit properly) and then in your 40s a podiatrist decides to tell you that you have Haglund’s Deformity.

“Deformity? Really? No one ever told me it was bad!” That’s not good language.

Incidentally Haglund’s Deformity doesn’t have to be “bad”. I think many people have it without noticing: it seems to come up as the background behind some incidences of bursitis and Achilles tendonitis. It’s all about the shape of the heel bone: at one end of the scale it is “normal” and at the other it can cause irritation (especially in some fashionable shoes). Somewhere along that spectrum the physicians decided to classify it as “deformed”. I dare say the doctor that came up with the term didn’t consider the negative connotations “deformity” has in most societies. Or maybe they did, and were conscious there was money to be made from “corrective surgery” (ok, maybe I’m cynical). Mind you, I gather some people are starting to call it “Haglund’s Syndrome” instead, which does seem less confrontational.

Diabetes

As I’ve described elsewhere, when I was young I developed Type 1 diabetes. This condition results from a breakdown of the insulin-producing cells in the pancreas (generally due to an auto-immune reaction). As a result I have to manually manage the balance between my body’s insulin needs, carbohydrates, exercise (and a few more complicating factors) instead of having my pancreas take care of it for me. Diabetes is a break-down in the normal functioning of the body, and thus of course it’s classified as a disease.

Unfortunately “disease” is another negative word. Diseases are something we usually think of as wanting to get rid of (most people would cut diseased branches off a fruit tree to save the tree, although amputation is a bit more of a stretch for people). When someone gets the flu they hope to get recover and then get on with life again without the flu. There is no cure for diabetes yet: it’s a chronic disease which we have to live with. Many people do find the word “condition” a less confrontational term, although strictly speaking diabetes can be classified as a disease so either term can be used (in the right context of course).

But with this disease, I’ve always lived what I think of as a normal life. I do many of the same things as people without diabetes. I go ride a bike, climb a hill, go to a music concert, go out for yum cha, etc, etc.

Hunting Humpback Whales the friendly way
That’s me standing up on the left

Diabetes doesn’t stop me doing things, and I generally don’t have to declare it to people. I haven’t had to go into a restaurant and need to tell the waiter that I have a disease or a condition: they don’t have to know (e.g. I make my own decisions about what and how much food I’m going to eat). Sometimes it becomes important to tell them, such as “Why have we been waiting for our food for over an hour? Please bring a fruit juice ASAP.” but that’s very rare for me.

Incidentally, asking for “diabetic” food (for example when flying) is usually the completely-wrong thing to do. Much of the focus then is on food for people with Type 2 diabetes (which works in subtly different ways) and in fact the foods that are then presented often seem to be based on dietary recommendations from many years ago and we now know are not good for us (Type 1 or Type 2). Ironically hospital “diabetic” meals are often the worst examples of this. We’re best-off being presented with “normal” (but preferably low-GI) food and then deciding how much to eat.

On the whole diabetes is a hidden disease, and I didn’t grow up thinking of myself as having “a disease”.

Other diseases

In early 2017 one of my regular blood tests showed up some suspicious-looking antibodies which started us down another path, and after a while I was diagnosed as having an allergy. To gluten.

Having a gluten allergy is otherwise known as having Coeliac Disease. There’s that D word again. It’s another chronic condition we have to live with every day.

It’s a lot more intrusive than diabetes though. Now when I order something at a restaurant I have to make sure I’m not getting any gluten. With my diabetes I could silently decide what and how much I’m going to eat (for example I love pizza, dumplings, ice-cream, chocolate, etc, but would usually eat less of them than I would if I didn’t have diabetes). But with coeliac disease I usually have to ask the wait staff about what dishes they have that don’t have gluten. If I’m lucky they’ll have marked it on the menu already.

And because some people are only “gluten intolerant” (medically) and others avoid gluten for fashion/trend reasons, I have to make sure the waiter lets the kitchen know that I have coeliac disease. For example they can’t prepare my food with the same utensils that have just been touching gluten-poisoned ingredients. Cross-contamination is a real thing that can have very serious consequences for coeliac disease, although other people might not notice.

So I’m forced to assign a label to myself, and state that “I have coeliac disease.” Or even “I am a Coeliac.” Also sometimes “please write it on the docket so the kitchen knows.” This is very different to the way I have lived with diabetes for the past 35 years, and was a bit of a shock to me. I have really noticed the way the different language affects everyone’s perceptions. Even my own.

I am lucky to live in Melbourne where there are lots of gluten-free food options, and there are enough other people with coeliac disease that the good eateries take it seriously. So finding and enjoying food isn’t a hard problem. When travelling this isn’t always as easy, but I do my best to not make unreasonable requests, and be friendly and cheerful about it. It’s worked OK so far (even when travelling in countries where I don’t speak the local language!). The foreign-language information cards provided by Coeliac Australia were a great help when I was in Russia. Incidentally, recently I had to help a new waitress here in Melbourne learn to spell c-o-e-l-i-a-c. But this was at one of our favourite eateries, and I was confident the kitchen would understand.

So like diabetes, coeliac disease shouldn’t stop me doing anything (other than enjoying some of my old favourite foods). But I do have to be a lot more vocal about having it.

There’s not much technology involved in living with coeliac disease (other than phone apps/databases of foods I suppose) so it might not feature much on this blog. But you never know…

Thoughts about Chronic Diseases

Chronic diseases do challenge the way a lot of healthcare works. Doctors can’t fix patients by giving them a treatment and then sending them on their way having “fixed” them: by definition chronic means “persisting for a long time or constantly recurring“. For many chronic diseases they will persist for the remainder of the patient’s life.

Doctors have to work with the patient and help them with tools to live their lives. Because the patient lives with their disease every day of their lives, they’re usually more familiar with it than many health care professionals (HCPs), and the smart doctors realise that the patient is in charge of ongoing management while the HCPs are the support team. Doctors who don’t realise this and become someone who tries to tell the patient what to do each time they meet are unfortunately too common, and we hear stories about these in diabetes communities. The words that HCPs use can have big impacts on the way they communicate with their chronic patients.

Hopefully we can all use language carefully to be able to each live our lives with positivity. Think carefully when talking to others (a patient, a friend, an acquaintance, or even a stranger) especially about health. Try not to be the person who tells them they have “a deformity”, or when talking about managing their glucose levels (or weight, for a non-diabetic example) accidentally refer to it as having “bad control” (it might not be their fault!). The list goes on…

#LanguageMatters!

2 thoughts on “Living with a disease”

  1. I guess as a T1 43 (years )and a person with RA and AS, I may be old school. I am still diabetic, and I still have disease. I also have a condition and I am a person not an object. I think the older I get, the less it matters to me whatever it is and whoever says it to me. Of course it was not always that way. It never is.

    1. Nothing wrong with that Rick!
      I find it’s interesting to notice the impact language has on us though. We do each react in different ways.

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