Imagine waking up everyday utterly exhausted. You know the aches and pains you get when you have the flu? Imagine living with the sort of pain that makes those flu symptoms seem like a good, manageable day. Imagine losing your memory, your brain function and not being in control of your own body.
Most people would give up. But I’m not ‘most people’.
My name is Kate and I am the founder of Cing Education – a website supporting young people with a chronic illness at school. This is a cause that is extremely close to my heart, and informs every decision I make about Cing, including my decision to start my business in the first place. So here is my story, in black and white. I won’t hold back, because I think that the most important aspect of life with a chronic illness or disability includes living openly and honestly. You may read this and hear an entirely new perspective that you had never considered. On the other hand, this might be an abridged version of your own story. If I could tell my readers, friends, colleagues and students one thing, it would be this: everyone has a story, and everyone has a duty to listen.
My story begins when I was about sixteen. I was just doing typical teenage things in Southern Sydney, Australia – going to school, hanging out with friends, chatting up the boys at the bus stop after school (and failing, I promise). My sister had just had a baby, and life was looking great and full of promise. As soon as my beautiful nephew began kindergarten, I began to notice that I was perpetually getting colds, flus and any virus that was going around. I had also started my first musical – a passion that would take me across Sydney and spark a whole new series of friendships that I treasure to this day. It was the hardest thing I had done to date and even though it left me exhausted, I was loving it.
I went to my doctor, who began doing some testing to see why my immune system seemed to be struggling. A referral was given to an immunology professor, who happened to be operating out of rooms in my suburb as well as his rooms in the city. I cannot thank my first GP enough for supporting me and actually investigating my problems. He was a kind man, who did not dismiss my symptoms as being hypochondriacal or unworthy of attention. He eventually went back to further study, and I’m sure has gone on to help many more people.
So off I went to this immunologist and I succumbed to many blood tests, an MRI and various other methods of testing. As this testing went on and my health began to decline, I cannot communicate the vast sense of confusion and stress that I was going through.
Anyone who has been through this, or is still going through it, knows that this is a unique combination of fear, anxiety and trepidation that can make or break a person.
Luckily for me, I think that this is one of the experiences that has shaped the person I am today, despite causing a few cracks along the way. As the results of these tests came back, it was confirmed that I had CREST Syndrome – an autoimmune condition. It was a chronic diagnosis, but manageable with medications. This was a blow, but it was not immediately life threatening. It was a setback, but not the end of the world.
Then things began to change.
School became harder and harder as I pushed through year 10 and began year 11. I was getting sick regularly, and missing school often. There was one month where I was hospitalised three times for various illnesses, and I almost had my appendix taken out due to a misdiagnosis that was thankfully ruled out before I made it to the operating table. My friends were so supportive, and their hospital and home visits were appreciated more than they will ever know. The flip-side of this was the missed birthdays, school events and after-school hangouts that shape most people’s relationships in their mid teens. I was the girl sitting in the hospital bed, missing parties and hoping for some sort of miracle. I wish I could say that there was a miracle, even ten years later. At least I can say now that I am not actively waiting for something to change.
Another diagnosis was soon added to the mix called Fibromyalgia.
This drastically changed my life as my symptoms became more pronounced. I was perpetually exhausted – unable to go to school, unwilling to get out of bed. Most days out required a week of recovery. Every illness I caught came with a vengeance, and school became a constant cycle of missing days, trying to catch up, attempting school and then crashing for a week. My friends tried to support me as best as they could, but I can look back and appreciate how hard it was to talk to someone in a medication-induced haze of exhaustion, hormonal mood swings and no positive outlook of how my future was going to be.
I struggled through my HSC, with a few major breakthroughs along the way. My first was the discovery of Bowen Therapy – a holistic approach that focuses on the body regenerating itself. I have been doing this for about five years now, and it has changed my life completely (four years without any serious hospital admissions now, guys!). I tried various medications, and eventually settled on a bit of a routine. School days missed became slightly fewer, and the promise of finishing school pushed me through my HSC.
I should also note that my Mum was my driving force behind all of my successes at this time, and still to this day. She researched every medication, every therapy suggested. She paid thousands of dollars in medical bills and spent countless nights on the horribly uncomfortable beds beside my own in the Paediatric ward. She showed up to the hospital at six o’clock in the morning to catch the doctors beginning their rounds, worked all day, then brought me dinner and a movie to watch in the wards. She even organised with my principal for him to go to the Board of Studies and lobby for my time spent catching up on schoolwork in hospital to count for the prescribed hours required in the classroom to pass the HSC. She supported my financially for my first year of uni and her home has always been open to me. She has become a nurse, counsellor, motivational coach, scientific researcher and all-around amazing mum.
As I started uni, I began to manage my illness a lot better.
I registered with disability services at my university, however, I still find that the services available equate to an extension on assignments and that is it. During flare ups, my body becomes so focused on dealing with pain and fatigue that my mental faculties diminish. When in remission, I maintain a high-distinction average in my university marks. If I am unwell – like I have been this semester – I barely pass. I can’t string two sentences together, I can’t extrapolate or synthesise information, and my working memory suffers. I can’t tell you how many times I’ve found my keys in the fridge instead of my handbag! I can’t forget that the very act of going to uni was exhausting – getting up early to go to class, travelling by train, walking to the uni grounds and across campus, trekking it up stairs because I couldn’t finds lifts to ease the burden, and panicking when I suddenly became ill at uni and started fainting on public transport.
Since then, I have weaned off many of my medications and now manage my illness through diet and exercise. I have a support network of family, friends and professionals who help monitor my progress, and I have gradually stepped away from the negative mindset that comes with a chronic diagnosis. This is my life now, and every day is a victory in one way or another. I have amazing friends, who respect my boundaries and make life so much better. I am proud of the journey I have taken, and my future is looking so much brighter (forgive the cliche). I am still in pain every day, but every day with a lower pain level is a blessing.
I am functioning, thriving, surviving.
I think that I am a completely different person now. My great days are becoming more and more, but the occasional crash can easily send me spiralling. I take things slowly and have begun to get back some of my spunk. I don’t put limitations of what I can and can’t achieve, because I now know that I can do whatever I want – just a little slower or more gently than my peers. Every day I get up and fight the demons that left me exhausted the day before. I take my meds, look in the mirror and I don’t see fat or tattoos or scars. I see each of the struggles I have overcome. I see medications that have left me numb, a disease that leaves me perpetually tired and unfit, and years of self-doubt, self-deprecation and a loss of hope. But most importantly, I see a whole lot of self love for a girl who tries her best and tries to be her most authentic self at all times. I see a girl who pushes her boundaries and aims higher than the expectations that have been laid out by professionals and non-professionals alike. I see someone that I am proud of.
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