The day you get told you have an incurable illness

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There are a great many things in life that we can control. What we eat, what we say, what we do; the list is endless. But one thing I have recently discovered is that health is never really in our control and can change in an unspeakably horrid instant.

Very recently I flew home from Sydney due to bad health. Leaving at the end of last year, Australia was the beginning of my indefinite travels and I didn’t expect to visit home for at least a couple of years but sadly, within just a few short weeks of arriving, I became sick. Little did I know back then just how much my life would change in the coming months.

Back in November when I began to feel exhausted, had no appetite, couldn’t keep my food in and turned yellow, I was told I had suspected liver damage due to an allergic reaction to medication I hadn’t taken before. Everything seemed to fit the profile so I didn’t question it. I had no choice but to continue to work through my horrible symptoms and took comfort in the fact that the liver is a fantastically healing organ and within a few weeks I would feel fine again.

Fast forward three months and my symptoms are back and so much worse than they were before to the point where 4 mouthfuls into a salad and I’m running to the bathroom. My eyes are bright yellow with jaundice, all I want to do is sleep and I’m scared of eating anything for fear it will only make me feel worse. This time I attribute the relapse to having 2 vodka and cokes, simply telling myself that my liver was not as healed as I thought it

Back at the doctors they start believing that my liver is not, in fact, the cause and that a gallbladder obstruction would explain all my symptoms. I am sent for an urgent ultrasound followed by an urgent CT scan and am told by the doctors that my gallbladder is grossly abnormal and I need it surgically removing within days. And this is where the Universe stepped in to help, though I didn’t realise it at the time.

I briefly considered staying in Sydney to have the surgery. Under Medicare rules, I would be entitled to the surgery for free in a public hospital and having your gallbladder removed is a very routine and small surgery. However, as the doctors were screaming how worrying the situation was, I began to wonder that if I had complications, I wouldn’t be able to afford to stay without income. I also had no support network left. In the two weeks previous to my abnormal gallbladder being discovered, my 3 closest friends (who I would have asked to help me out) all left the city and my cousin, who lived an hour North, had too many plans to come with me. And so I made the extremely quick and necessary decision to come home. There were just too many ‘what ifs’ if I had stayed in Sydney that I couldn’t risk staying so I looked into booking flights.

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My last sunset over Australia and it was a beaut!

I considered coming back the following Thursday when mum mentioned that from the Wednesday, booked weeks in advancenot knowing I would be coming back, she actually had 8 days off from work so I booked to fly on the Tuesday to spend as much time as I could with her. Thumbs up to the Universe I thought; the timing couldn’t have been better.

And then, less than 24 hours after landing at Heathrow Airport, I was at my doctors surgery with my CT films in hand telling him what had happened and that I had come home for gallbladder surgery. He replied by telling me, after a very quick glance at my radiology report and blood results, that my liver WAS the problem as first suspected, not my gallbladder. He told me I would be having urgent blood tests that day (I filled 5 vials!!!) and an appointment with a Consultant who specialised in liver problems. I felt deflated and upset that in 10 minutes he’d taken me right back to square one but was also angry at the thought that my doctors in Sydney had misdiagnosed me so badly.

A week later and I was paying to see the Consultant privately to speed up the investigative process. I went into the consultation with every expectation he would tell me that whatever condition I had would be diet-controlled. ‘Your liver struggles to break down protein’ or ‘stay away from a highly fatty diet’. I was not expecting his next sentence to change my life…

“I believe you have autoimmune hepatitis”.

And with that, my voice began to tremble and tears began to pour down my face as my body began to shake.

“Hepatitis?? But all my tests came back negative! Oh god, were they wrong?!”

He went on to explain that hepatitis is merely the term for inflammation of the liver and that it was NOT the infectious strain in which you worry about contamination. Essentially my body is attacking my liver, trying to fight off an infection that isn’t present. My body was, and is, attacking itself into illness; the exact opposite of what it is designed to do.

And when I didn’t think he could say anything worse, he spoke two words no person wants to hear:

lifelong and incurable.

“What did I do?” “Why have I got it?” “Is it going to kill me?”; I asked questions but was too shocked to hear his reply or take it all in. I went in thinking it was probably a diet problem and I got diagnosed with a lifelong incurable illness that can’t be treated, only ‘managed’ and I would need a liver biopsy within days. It was all too much as I sat there crying whilst he rang the local hospital telling them I was coming straight over for urgent blood tests.

Mum could do nothing but get emotional herself as I sat in the car and cried in silence as we drove to hospital, the place I swore I would never enter again. Bumping into old colleagues who greeted me with a smile received nothing but tears in return.

And for the rest of the day I couldn’t speak to anyone despite them asking what the doctor had said. I lay on my bed for the rest of the night trying to make sense of it all as I periodically started crying.

The condition is random; no one knows what causes it and women of my age are the most likely people to get it; I couldn’t help but think ‘why me?’.  I’m a healthy person from a healthy family.  We don’t have genetic conditions, weak hearts or cancer; I couldn’t understand it.  I’d never wish sickness on others but I found myself asking why someone like my father couldn’t be ill instead of me.

People try and help you find the positives in situations like these; ‘at least it won’t kill you’, ‘it could be worse’ and ‘at least it’s manageable’. No, it wasn’t cancer and no, it won’t kill me and of course I’m eternally grateful for that, truly, but my life had changed in one afternoon and I needed some time.

When people said ‘at least it’s manageable’, it didn’t feel like they were helping me find the positive, it felt like they were being dismissive. That my entire life had changed in an instant but it wasn’t life-threatening so I had nothing to complain about. But I was (and am) so angry at the unfairness of it all. It felt like the Universe hated me. That karma was trying to punish me for something I was unaware of.

In the week after my unofficial diagnosis, I had a liver biopsy which was filled with an immense amount of anxiety, not least because I had to spend 9 hours in the hospital that caused my breakdown; the entire reason I had wanted to start a new life in Australia. I was tearful and shaking throughout the day despite the biopsy going well but, even with lovely colleagues visiting unexpectedly, it was an incredibly emotional day for me. People told me I’d just have to ‘get over it [my anxieties]’ and whilst I have moved on from my breakdown in huge leaps, nothing can truly prepare you for a day bed-bound in the place that can still haunt your dreams at night.

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One week later and I was back at the hospital visiting my consultant. I went alone believing that I already knew my diagnosis so nothing would shock me; and then he explained my results. Liver damage is scaled 0-6 with six being cirrhosis; permanent damage which may result in the need for a liver transplant. Despite knowing I had ‘only’ been through 2 bouts of liver inflammation, I was floored when the consultant told me that I already rated a 4 meaning my liver is moderately scarred. It won’t heal from that. The medication won’t reverse it; only prevent it getting worse. I surprised myself and was matter of fact about it. He told me the plan for medication and though I wasn’t expecting to take as much as he said, I took it all on board and left.  It didn’t hit me until later when I started to think about the cycle of it all.  Though I had initially felt the huge hit of symptoms in November, my body had obviously been sick for months before that and it was a question I couldn’t help but get stuck with; why did the Universe make me travel to the other side of the world just so I could get sick and bring me back again?  The unjust and cruel randomness of it all truly hurt.

The next day I sat waiting for my prescription and a wave of sadness hit me; this was my life from now on. And when she handed me 14 boxes of tablets, tears began to form and as I walked home and I struggled to hold them back. But when I closed my front door and sat on my bed in a silent house, I began to sob uncontrollably. Mascara stung my eyes as my salty tears washed it away and I choked as I struggled to catch my breath through my wails. If it sounds dramatic, it’s because it was. I was overcome with it all.  Overcome with the stress and heartache of pushing myself in Australia to live the life I wanted for the last 5 months only for the bottom to fall out.  Overcome with the sudden seriousness of everything.  Overcome with the realisation that I have never looked healthier yet never been sicker.

I am 27 years old. I’m not supposed to be sick. I’m not supposed to need 10 pills a day (8 steroid and 2 vitamin) to survive but this is my life right now.

Any infection (such as a simple cold) or mass of toxins are going to cause me problems for the foreseeable future and though I have no diet restrictions (aside from no alcohol), I have to admit that I can’t look at food the same way right now, worried that any problems with undercooking could hurt me greatly whilst my liver is still recovering.  I should, after 5-6 months, be able to come off the steroids and move on to longterm medication and I look forward to that greatly.  One of the biggest shocks in all this has been to try and change my mindset from someone who doesn’t even take pills for a headache (though makes an awful patient), to someone who’s breakfast consists of enough steroids to get me automatic entry into a Mr Universe contest.  

I will, of course, reach acceptance at some point. It won’t stop me travelling and doing the things I love (as long as I respond to the initial hit of steroids) and I’m extremely pleased about that but for the moment, I am trying to get my head around my life changing overnight. My body has signed me up for a lifelong contract I wasn’t expecting and it will take time to come to terms with it. It has nothing to do with being a negative person and not seeing the positives surrounding my condition and everything to do with the fact that one day I was blissfully ignorant about my health and the next, I wasn’t.

Though there are zero positives to being sick and absolutely no reason to say ‘everything happens for a reason’ (why would anyone want to be sick?), there are positives that I can take away (and accept right now):

-When I first noticed I was ill in November, work were incredible and if I needed a break to try and eat or just rest, they did and they genuinely cared how I was and I’m incredibly grateful for that.

-I’m also thankful that coming home was timed so well with mum’s time off from work; spending time with her was exactly what I needed as I was diagnosed.

-And lastly, the biggest positive I can accept today? That I made the decision to come home for ‘surgery’. If I had stayed in Sydney, not only would I have had surgery which was a waste of everyone’s time (and could have lead to further complications or even death because ANY surgery, big or small, is always a risk) but I would have continued to get more sick and could have done untold damage to my liver so for that, I am very grateful that I made that heartbreaking decision to leave.

As for everything else? I’m sick and there’s nothing I can do or say to change it. I’m hurting and angry right now but that’s ok. They’re emotions to be felt and go through just like any other and I will reach acceptance in my own time. I won’t apologise for needing some time to get used to something so scary and new but I will be ok in the end.

As mum once said you’re never lost for long.

Disclaimer: This article was originally posted to Reclaimingmyfuture.com.  I am including it on this site so that you can understand my journey a little better but you’ll be pleased to know that I’m doing ok and slowly beginning to accept my situation.

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