It has been a year now since I was diagnosed with a life
threatening, extremely rare, autoimmune disease called Churg
Strauss Vescalitis (CSV). I have been sick for years, and my
diagnosis came at the beginning of the third and lethal stage of
surprise you to hear that it has been the worst and most
challenging year of my life. I have had to undergo six months
of bi-weekly hospital treatments of chemotherapy, steroid infusions
and numerous other oral drugs, weekly blood tests as well as all
kinds of invasive checks and probes.
Five months have passed since I completed my course of
chemotherapy. My prognosis is very positive. My specialist
says I am now in the yellow zone, having cleared the red and orange
ones. I am in remission and, hopefully, in another year's time I
can put this whole thing behind me.
I have had the most amazing support from the people around me, and
many of you sent me your best wishes on the site, personally
e-mailed me, sent me cards and gifts and generally made me feel so
As a thank you to you all, I wanted to share my two biggest
health-related learnings from this whole experience. I hope I
will help some of you to manage your own health concerns. I
hope I will validate how you might be feeling. I hope you can
take something from my experience and change yours, if needed.
Don't ever minimise
I have had health concerns for many years. Generally I've
always been a very fit, strong and healthy looking person.
But I have also had all these weird symptoms which could get quite
debilitating. As a no-nonsense kind of gal, my tendency was
to just grin and bear it. And those around me have always
rewarded this attitude, including, unfortunately, some health
A year ago, I participated in the Lifewise Big Sleepout and I
slept rough to help raise funds for this worthwhile
organisation. Overnight I watched my legs swell, and by
morning they were the size of two tree trunks. Coming home, I
called my usual GP, and despite me saying I had two very swollen
legs, they said they couldn't see me until the following
week. At which point I made a decision that literally, I
believe, played a crucial role in saving my life: I changed back to
my former GP, Kathy, a woman who is careful and considerate.
When I rang and told her what was happening she made time for me
straight away. Kathy, took the situation extremely
seriously, sending me to do all the important checks. Most
crucially, she called the rooms of Associate Professor Rohan
Arematanga and nagged the receptionist to make sure I got to see
him the very next week.
In hindsight, if I had gone back to my regular GP, a man whose
modus operandi was to treat me as if I was a slightly neurotic
middle class complainer, things would have turned out very
differently. The CSV was progressing very quickly and
aggressively and I wasn't far from experiencing organ
failure. It was the decisive actions of Kathy and Associate
Professor Ameratange that literally saved my life.
Over the years I had a sense that something was wrong, but I
silenced that inner voice and applied 'logic' to the situation
rather than listening to my instinct about my health. It
didn't help that many around me also subscribed to the philosophy
of just slogging it out and ignoring bodily ailments until they -
hopefully - went away. The scariest thing is when medical
professionals do that as well.
From my own experience and my observations and discussions with
other women, they seem to do it more to women than men. I now
think that there is a tendency to treat women, even women as
educated, assertive and confident as me with an unacceptable degree
of condescension by medical professionals. This to me now
represents an unacceptable level of risk given what is at
If you feel that something isn't right about your health, I urge
you to keep pursuing it until you get to the bottom of it. If
your GP treats you as if you are neurotic, change GPs. Don't
be afraid to be the Spanish Inquisition with your
specialists. I turn up to my appointments with 101 questions
that I've written down to make sure I cover everything. If
you don't understand what they say because they use too much
'medical jargon' ask them to repeat it in simple English, then
repeat what you understood back to them to make sure you've got
In short, never, ever let anyone minimise your health
concerns. You are smart, educated, confident, rational women
and should be treated as such by everyone, no matter how many
medical degrees they have.
The wisdom of rest
My journey is still far from over. Unfortunately there
isn't a fairy tale ending. I am still on very heavy
medication (I am a walking pharmacy). But because everything
is going well and I am in the yellow zone, I have resumed much more
of a normal life. The struggle is to keep the balance between
living life to the full and remaining vigilant and careful about my
One of the biggest challenges this winter has been to keep away
from the normal winter bugs. My immune system is still
suppressed because of the ongoing treatment so I have had to be
very mindful of not getting bugs that I can't shake. With two
school-aged children this can be very challenging!
In the past I would just ignore bugs until they literally floored
me with high fever - as I am sure most of you do. I'd take
the various supplements and over the counter medicines that help
you soldier on and inevitably end up even sicker.
Not this year. Against my very nature, but aware that the
price of me getting sick was far too high, I would just stop and
rest the moment I felt unwell. Even if it was for just a
couple of hours, or on very few occasions I would just rest for one
whole day. And do you know what? I have been the most
well this winter of any winter for the last however many
years. And not just me, also my family, as I would force them
to rest the moment they felt a little unwell too.
It makes sense to me now that the body needs some time to
recuperate to fight bugs. I see so many women (yes especially
women, because if men get the flu they are more likely to take to
their bed) who keep slogging away, trying to ignore their bugs and
end up very sick. Whereas, in fact, if they'd taken just one
day off, to just, yes, REST, the outcome might have been quite
I continued working while I was sick, even when I was
undergoing the chemo. To do so, I made a conscious effort to be
very mindful that I didn't overdo it and get myself into
strife. It seems to have worked. And anyway, when I did try
to 'push through' and do work when under the weather it always took
me twice as long and the end product was half as good...
So this is my second piece of advice to you all: if you feeling
under the weather just stop, have a rest, wait until you feel
better, and you'll be much better for it.
Here's to our health!