Today we are looking at the common challenges we face in getting diagnosed when we are dealing with an invisible or non-acute illness.

In part one we looked at who we reach out to for support upon a new diagnosis.

Read about coping with a recent diagnosis here.

Do I need this?

If you have a broken leg, that will probably be pretty easy to diagnose and this information probably won’t apply to you.

However if you have a broken leg because you fell over due to the unexplained dizziness then read on because this may help you and your doctor get to the bottom of that dizziness.

Painting a Clear Picture

So, you get into the surgery and the doctor asks why you came to see them.

What do you say?

I’ve seen it happen, both to myself and others – a diagnosis is delayed for so long because of communication issues with the doctor.

You’ll generally only see your doctor for a short time and in that space you have to put across all that you’re feeling and going through, in the hope that they’ll be able to tell you what’s going on.

You’d be forgiven for just saying what’s on your mind and presenting the symptoms as they occur to you on the day.

I did just this and it took me a long time to get a diagnosis and find out what was going on with my body.

No, I mean really tired…

After my relapse at eighteen, I was hit with massive waves of severe exhaustion like nothing I’d felt before. I call it severe exhaustion now but at the time I said I felt ‘really, really tired’. I was dealing with the exhaustion, plus pain, plus fear, plus so many other things. The first thing I thought to mention was ‘tired’.

TTAT, TTFN and co.

Now imagine a GP dealing with a patient who says that they’re ‘really tired’. It doesn’t really narrow things down a lot does it?

The word ‘tired’ in itself is open to interpretation as there are so many different levels of being tired and it can stem from so many sources.

A patient saying they’re ‘tired’ could easily indicate:

* poor diet

* bad sleeping habits

* too much sugar leading to big energy crashes

* lack of exercise.

* Even with an illness, ‘tired’ or fatigue could be a side effect of pain.

* of poor sleep due to other symptoms and so on.

Changes in energy levels is a side effect of many conditions.

Tiredness can be a symptom of everything from narcolepsy to cancer.

Doctors actually have a shorthand they use in their notes because it comes up that frequently. TATT – Tired all the time.

(TTFN of course, is ta ta for now, just a little Winnie the Pooh joke.)

Detective Hour

waitingroomHow exactly was my GP supposed to diagnose me based on the symptom of “tired”?

The appointment was only for a few minutes and they don’t see the overall pattern of my days which were spent mostly sleeping or at least lying down, unable to move.

It wasn’t until I began to call it ‘severe and debilitating exhaustion’ that my GP started to understand.

I gave examples and explained how I would crawl to the kitchen, pour myself a bowl of cereal and then lie on the sofa, (if I could make it) or on the kitchen floor, (more likely), for several hours while the cereal went soggy and uneaten and I went hungry and exhausted.

This was an exhaustion I just couldn’t fight.

I also had to explain how my trips to the GPs required so much rest before and afterwards and that I wasn’t usually this well.

My turning point, or rather slump

They didn’t really understand until the day that Linus had to physically carry me into the office and drape me over a chair while I mumbled whatever words I could pull from the exhausted haze in my mind.

Working with your doctors

This is not unusual and not the doctor’s fault.

Your doctor doesn’t know what your life is like, what your usual routine is or exactly how these symptoms are affecting you.

I know it’s hard.

You’ve got your own worries and the pain, sickness, dizziness (or whatever symptoms you have to deal with) can leave you with very little patience to explain everything to your doctor.

Making an appointment plan

hospital
It’s worth deciding exactly what you want to say to your doctor beforehand.

(For me, it was really describing the severe exhaustion, for you it might be putting across the level and kind of pain you’re in.)

Let’s make it easy and clear to them. They’ll be much more able to diagnose and help you if they have a clear picture, which will then make things easier for you.

We don’t need to get melodramatic, but we do need to be accurate.

So if you have pain, think about it before you go in and plan your descriptions.

Saying “I have a pain in my stomach” is not as helpful as saying “I have sharp, jabbing, intermittent pains in my abdomen on the left side about four inches from my hip. I have been having these for two weeks, day and night”.

That’s much more likely to help the doctor and you.

Take Trail Blazing Action:

1) If you have a doctor’s appointment approaching make sure you think about what to say an how to say it before you go in.

2) Come over to our Facebook page and share your experience of diagnosis – seeking or finding.

3) Sign up to the Trail Blazing Times Newsletter to make sure you don’t miss the next installment of our diagnosis series!

Photo Credit: 1 Alex E. Proimos via Compfight cc Photo Credit: 2 Steve Snodgrass via Compfight cc Photo Credit: 3 camil tulcan via Compfight cc