Page 28 - N&V Winter 2019

“Isn’t that a character from Harry Potter?”

10 Lessons from my 10 Years with Lupus

Niamh O’Kane

1. enjoy the common cold realise in the following years that attending concerts, while I sat indoors
equipping yourself with knowledge, grappling with my new identity. However,
I jest, of course. Nobody enjoys drowning donning information as your armour and looking back a decade later, I realise that
in their own mucus or coughing until their evidence your weapon, is the first step in while I didn’t attend my maths exam, I did
ribs ache. However, for a disease ninja, understanding, and defeating, the monster return to school. I wasn’t able to go
there is a strange pleasure in the cold. you’re up against. banana boating, but my friends could visit
There is a pleasure in showing an in the comfort of my own home. I am more
observable and undisputable badge of 3. look for the good aware now than ever of how incredibly
sickness to the world. The symptoms of lucky I was to receive a relatively quick
lupus do not always present themselves so The young girl with lupus was inevitably diagnosis of a manageable condition; and
clearly, and the sneakiest of them all? somewhat of an attraction in the
Fatigue. It is hard to explain what lupus Rheumatology ward, a corridor with mostly on days where I allow self-pity to creep in,
fatigue is like, especially because older adults, but I was lucky enough to get I think of those battling worse demons, and
everyone experiences tiredness. For a a private room on this ward, it even had for them I count my blessings.
second, imagine you’ve had a long day at its own ensuite! Kindness spread its fingers 5. You can’t pour from an empty cup
work, went to the gym, maybe went out over every corner of this room. A 23-year-
dancing with friends. You get home, kick old patient in for a day procedure on his I was involved in helping run a summer
off your shoes and walk to your bedroom. knee had remarked to his bed neighbours club for young children from my teens to
You know that feeling just before you get “I must be the youngest one here!” and early twenties. It was always an intense
into bed? Where your head aches for a they sent him my direction; he knocked on two weeks,
pillow underneath, your legs and feet are my door, introduced himself, and offered starting at
buzzing with the success of a busy day, me his portable DVD player. The cleaner 9am and often
and your mind is desperate to shut off for saw me watching Family Guy and stopped not finishing
the night. Now imagine you feel like this to chat about his favourite episode. The until 11pm. It
after waking up, and no matter how deep catering staff offered me seconds when would be this
the coffee cup, how big the energy drink, they saw my appetite returning. The junior club which
or how long the nap, you still feel the doctor offered me his phone to watch would deliver
same. This is lupus fatigue, it is not always Father Ted. I was too sick, and frankly too my first
visible, but it is always there. Explaining frightened, to socialise with those outside difficult lesson
this is so incredibly difficult, that it is my lovely little private cocoon, but on my on burnout; I’d
sometimes easier to have the cold. last day when I wheeled homeward-bound give it my all
down the corridor, I received a wealth of in the first few
2. Knowledge is power warm wishes, smiles and waves from the days, then July 2014:
May 2009. The registrar swings into my dozens of strangers who had been rooting slow to the Summer club leader
hospital room, “good news!” I had been for me, unseen, from behind my walls. Two point of exhaustion in the latter end of the
with them for two weeks before they said years later I would visit the same hospital, week. One year, my team sat me down
the word. Lupus. Six months prior, I was only to discover that the room I occupied and insisted that I take the Wednesday
told I had growing pains, then post-viral was - and always had been - in use as a morning off to sleep. I fought with them
arthritis, and finally rheumatoid arthritis, storage room. The nurses had cleared it and lost. My friends could see my limits
but this word was new. “Lupus? Like out for the young girl with lupus. more clearly than I could, which I detested,
Professor Lupin? As in werewolf?” So at but they fought with me because they
least I wasn’t 4. Count your blessings cared. Everyone on earth has limitations,
starting from I was 15. In the weeks prior to hospitali- some more than others, and recognising
nothing. I sation, I was due to sit my GCSE maths. them is not weak. It can be especially
always had an My teacher called the house on the difficult when you face limitations you
interest in morning of the exam and my mum spoke didn’t have last week or last year, but
medicine, and with her. When she returned to my owning them can make all the difference
was chuffed bedroom she would tell me that my maths to your physical wellbeing and your mind.
with having teacher was terribly upset by the news of To this day, and on the most difficult days,
diagnosed my illness. I recall finding it strange, I remember the kindness with which my
myself with because I just thought it was a blip. I friends stood their ground and try to show
rheumatoid imagined that my tiredness would soon even half of that kindness to myself.
arthritis before abate, that I would quickly regain
seeing the May 2009: appetite, or stand up and walk to the 6. move the goalposts
Rheumatologist, Week 3 of my hospital stay bathroom unassisted. As time went on and I Medicine was the goal, but as my A-levels
but it was clearly time to do some fresh entered and exited hospitals, I would approached, I struggled more than most.
research. I would never forget the begin my regimen of medication and read Attending a full school day was draining,
excitement in my registrar’s voice when he all the literature I could find, and as the and I would have very little left to give in
sat with me and explained my diagnosis, reality of my situation became clearer, so the evenings. The blinkers were on, and
268C unfair! My friends
something I found peculiar. How was this did the anger. How medicine was all I saw. So, when I fell a
news anything but bad? I would come to spent the summer banana-boating and grade short in Chemistry, my world came
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luPus uK NEWS & VIEWS SUMMER 2019