Practical advice and personal stories from children ... - MS Australia

GROWING UP WITH MS
Support for Siblings
Case Study:
Angela’s Story
Age: 23
Occupation: Student
Siblings: 2 sisters and 1 brother
Diagnosed with MS: Aged 10
What was it like when you were
first diagnosed with MS?
I was eight years old when I had my
first MS attack but I was officially
diagnosed with MS two years later.
The symptoms weren’t too bad at first
but by the second year, I kept having
regular attacks that affected my
speech, vision and mobility. After two
lumbar punctures and numerous MRI
scans, I was eventually diagnosed.
I remember being in Westmead
Children’s Hospital and everyone
swarming over me. It was pretty scary
not knowing what was wrong, but I
was also concerned about school.
Spending so much time in hospital,
all I could think was, ‘I don’t want to
repeat’.
I had never heard of MS before and
neither had my parents. It wasn’t until
I was about 12 that I became fully
aware of what I have and what this
means. MS Australia – ACT/NSW/VIC
sent me a newly diagnosed kit and I
remember reading along thinking ‘yes,
that’s me’. I realised I wasn’t alone.
Have you had a strong support
network around you?
Yes, my family provided wonderful
support, and still do. I am the
youngest of three but I am particularly
close to my sister Josie who is just
one year older than me. I think my
parents and Josie took on a lot of the
pressure. My parents are Lebanese,
so for them, MS was even more
foreign. In the Lebanese culture, illness
is generally something that you keep
to yourself. English is their second
language, so understanding what
was going on was very confronting
for them. I think they learnt the most
by just watching how the MS was
affecting me. It was especially hard for
them to explain to me how important it
was to take the injections.
MS Australia has also been an
amazing support, especially when I
was changing medications. A nurse
would come to see me whenever I
needed them to.
How do you feel MS affected you
as you were growing up?
I didn’t have to repeat a grade at
school, which was good. All of the
teachers realised that when I was
at school, I worked extra hard to
catch up.
I always felt like I couldn’t tell
anyone else about my MS. You know
little kids; they think that they’ll catch
MS just by hanging around someone
who has it, so I didn’t tell anyone until
after year 12 when I hand-picked three
friends who I wanted to know. They
were really great about it.
As a kid, it can be very frustrating
not being able to do as much as other
kids can. From an early age, I didn’t
really take part in sport because it
would just exhaust me. I learnt pretty
quickly what I can and can’t do. I
like to stretch my limits, but that isn’t
always good for my MS. Stress can
definitely flare things up for me.
Like anyone, I do go through times
when I’m in denial about the MS.
Sometimes I don’t think about it at
all and I let normal life take over. But
there are moments when I think,
‘why me?’
Has there been anything positive
to come out of your experience?
Yes, I’d always thought that I would
like to do something with MS
Australia; to give back what they
have given to me. When I saw an
advertisement calling for Peer Support
Volunteers, I thought it would be a
good opportunity. Now, it’s actually
very rewarding.
I like helping others realise that
they’re not alone and that they’ll get
through the challenges that MS throws
at them.
What would you like to achieve in
the future?
I like this feeling of being able to
help other people. I am studying a
Diploma of Community Services and
doing work experience at the Wesley
Mission, Youth Outreach Centre, so I
think I’d like to do more of that.
Thinkstock/Hemera
14 intouch autumn 2011
www.msaustralia.org.au/actnswvic