Invisible trouble
After constantly feeling sick, Jacqueline Wall, 28, from Wigan, wondered whether she would ever get any answers about her mystery condition...
Lowering myself into the bath, I sighed... Perfect! Some well-earned, mummy-only time. The hot, bubbly water washed over my aching body.
It was September 2012, and I’d been in pain all day.
But with newborn Harvey, and my Caitlin, one, to look after, I’d learned to live with it. Relaxing, I closed my eyes. Then my partner, Darren, 28, bustled in, fussing around.
‘Er, do you mind? I’m in the bath!’ I laughed. Darren stopped in his tracks, staring at me. ‘What?’ I asked. ‘Jac... you’re yellow!’ he said. What!? ‘Get out the bath – I’m taking you to hospital,’ he ordered. Stunned, I did as he said. As I dried off, I caught a glimpse of myself in the mirror. I was yellow – all over! I’d been in and out of hospital for years suffering with similar excruciating pains, but I’d never changed colour before. Leaving the kids with their grandparents, Darren drove me to Wigan Hospital. The doctors rushed me off for blood tests and an ultrasound. As the sonographer searched my abdomen, she stopped. ‘You have a lump blocking the bile duct,’ she said. They immediately thought it was cancer. Bile had backed up in my body, explaining the weird colour of my skin. I was
transferred to a Manchester hospital for more specialised tests.
Further blood tests showed my liver enzyme levels were extremely high. A bad sign. Doctors said they would have to remove the lump immediately, and test it for cancer.
Darren clutched my hand as the news sank in.
Before I knew it, I’d been wheeled into theatre, where surgeons removed the lump.
But, as I was recovering in hospital, they broke the bad news.
‘It looks like cancer. Your body is shutting down,’ the specialist said. I sat there, speechless. I was only 22, with two little ones at home who needed me. My time in hospital was a blur. I needed more tests to confirm it was cancer.
I had pain treatment, stent operations, and biopsies, while Darren split himself between
hospital and home.
Friends and family helped with the kids.
Six weeks on, the doctors dropped another bombshell.
Further tests had shown I didn’t have cancer after all. I was relieved, but so confused. Why was I still so sick? The doctors were baffled, but said I could go home as long as I came in regularly for tests.
A year passed, and I even started to feel better.
Until, one morning in February 2015, I woke up yellow again.
The doctors checked for another lump at once – nothing.
More tests, scans, and probing awaited me.
‘I just want to know what’s wrong,’ I sobbed to Darren. Finally, that April... ‘You have numerous
autoimmune diseases,’ the doctor explained.
He said that the original lump a year before had developed due to autoimmune pancreatitis.
Then one thing after another was flagged up – biliary and liver disease, osteoporosis, rheumatoid arthritis, and Bric disease, a very rare liver disease which had made the poison in my bile turn me yellow.
Six diseases – and counting!
I was relieved I wasn’t dying, but filled with dread, too.
I’d always known something was wrong, but never imagined it’d be this bad.
My doctor called them all invisible illnesses.
It explained so much – including the pain and exhaustion.
I faced a life-long battle with the horrible-sounding illnesses, and
potentially faced even more of them.
Most were incurable. The doctors had no idea what caused my condition,.
At first, I was angry – it just felt so unfair. But, slowly, I learned to cope. I have good days and bad and still have constant pain in my stomach, or spine, and all my joints.
I take 10 different tablets, some twice a day and others as many as six times a day.
I’m still off work, but I’m hoping to go back as soon as I can.
Darren’s been my rock, helping with Caitlin, now six, and Harvey, five, when the pain gets too much. I’ve set up a Facebook support group called Our Invisible Illnesses – Autoimmune Disease and Me, to help others like me.
Knowing what’s wrong is half the battle.
If I can help someone avoid my suffering, it’ll make it all worth it.
It felt really unfair