To Label or not to Label?

Labels are important. They tell me what should go in the dryer and what shouldn’t. Should tell me whether those Brazil nuts are organic or chemically laden. And also tells me whether xantham gum will make my gluten free banana muffins, fluffy bite sized morsels, or rock hard, teeth chipping chunks.

The label provides direction. It is a navigator. Sometimes even a safety net. It assures me my new snug jumper doesn’t come out Franki-sized.

But I’ve learnt that not all labels are helpful. Sometimes they’re not right.

It’s like the new bargain skirt that assures you you’re a slim fit size 6, when the rest of your wardrobe suggests you may be a comfortable size 12. And sometimes labels require a bit of caution, like these candidates for the Annual Wacky Warning Labels.

Anyone who has ever gone to a doctor with a pounding headache, sore neck and a pocket full of tissues is relieved when the doc confirms “you’ve got a nasty case of the cold going around, but it’s not the flu.”

Great…4 days and I’ll be right. Your loved one makes you chicken soup, you claim the best position, rugged up in front of the TV. And you’ve told the boss you’ll see them next week. Everyone gets it.

Even if the doc delivers a devastating “C” diagnosis, which 1 in 2 Australian men and 1 in 3 Australian women will experience by the time they turn 85, it is usually followed with a plan of reassurance that includes surgery to stop those multiplying cells and to remove the foreign mass followed by rounds of gut wrenching chemotherapy and radiation.

The fear and shock are overwhelming. You’re not quite sure how to tell the boss, let alone you’re loved ones, and you know your life has changed forever, in that single moment. Everyone understands the gravity of the situation. Everyone gets it.

But if you’re told you have Myasthenia Gravis, Motor Neurone, Fibromyalgia or any other of the 80-plus auto immune diseases that have now been diagnosed, the general response from everyone including your friends and sometimes even your GP is “Hmmm” or perhaps, “I’ve heard of it. What is that, again?”

How likely is that kind of diagnosis? Today, over 1.1 million Australians have been diagnosed with an auto immune disease, that’s 1 in 20 and rising. trying to manage their day, their jobs, their symptoms, their feelings and the feelings of those close to them whilst their body is in hyper alert. There are of course, many who are nowhere near diagnosis.

This is where the label isn’t so helpful. In auto immune disease it almost doesn’t matter what permutation has developed, what symptoms are visible or invisible to the naked eye. Because modern medicine doesn’t have an answer and definitely doesn’t have an explanation. From the outside, it’s hard to get.

In some cases there are modern pharmaceutical drugs that help relieve symptoms, but that requires a lot of tests, lots of scans and lots of experimentation. There is no simple, off the shelf approach.

For others, alternative therapies such as acupuncture and naturopathy can provide relief, but this is usually limited by how deep your pockets are. In the first year of my diagnosis, I spent over $15,000 on medical, and more than 40% was out of pocket. I was desperate – for a diagnosis, for a label, for a cure.

The reality is there is no cure. And this reality can be hard to accept.

In the last month I have had my “reviews” with my medical team. They currently consist of a rheumatologist, an immunologist, an endocrinologist, a psychologist, an exercise physiologist and my GP. Each one of them an expert in their field, but none able to treat me holistically – as one body.

The one exception is my naturopath, who is a medically trained nurse, and understands the western medicine model but explores what else my body may be crying out for (but more about this later).

When I met with my immunologist, the leading professor in the field, he asked what symptoms I was experiencing, what my current drug regime was.

He also asked me how my mood was. From any medical professional’s perspective, mood is a key indicator of how a patient is currently managing or struggling with a chronic illness, therefore indicating the likelihood of depression.

I stated I was ok. I wasn’t as crazy as I was when I was first diagnosed, although my symptoms had been unrelenting for the past 9 months. I told him I had learnt to accept that pain was part of my every day, that the “label” didn’t help me and that it simply didn’t matter. I had learnt to accept this and tried to manage each day as it came.

“That’s great to hear” he responded, “that is the hardest part for any patient to accept.

“Ultimately you are the manager and we’re just your advisors”.

I left that appointment a little bamboozled…I’m the manager? But I have no idea what I am dealing with and neither do you!

And when I met with my rheumatologist two weeks later. The same series of questions and answers and then he bluntly stated that it was the end of the road for him…there was simply nothing left in his bag of tricks. He had taken me as far as current medicine could go.

No follow up appointment, no ongoing referral. I felt like I’d been dumped!

So where to now?

Back to the things that I know help me manage my every day – a balanced diet, cut out the sugar, the evening glass of wine, back to some basic exercise, maybe even yoga on the days I don’t feel like my hands have been put through a food processor, and a reminder to myself to be kind.

But the ‘manager/advisor’ comment has been tumbling around in my head for a few weeks now. And with a series of new appointments and specialists coming up I’m wondering.

Advisors eh? Well if that’s the case, “I’d like to speak to my advisors about my current investment portfolio and my expected return.”

Could be an interesting conversation.

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