“I think perhaps this is caused by stress. You’re putting yourself under a lot of pressure applying to university.”
It turned out that I was living with undiagnosed active Tuberculosis.
“We’re going to refer you to a psychologist.”
Two weeks later I went into my first life-threatening adrenal crisis. I wasn’t producing cortisol. If untreated this leads to a coma and death.
“I understand there’s a perceived inability to walk, perceived abdominal swelling…”
I was later diagnosed with multiple vascular compressions, stopping blood from flowing to vital organs in my body.
It is crushing how almost every female patient I have met who has lived with an undiagnosed chronic illness has at some point in their journey been told:
‘It’s all in your head’.
Let me introduce you to some of the brave women I’ve met along the way:
Emily, 20 years old - accused of refusing to eat and diagnosed with an eating disorder. Emily later found out she had Median Arcuate Ligament Syndrome (MALS); a compression of the celiac artery was physically stopping her from being able to eat. A week post-surgery, I saw Emily delight in tucking into a cheeseburger.
Lisa, 40 years old – Lisa had a young child. She was diagnosed with a serious mental health illness and sectioned. It later turned out her thyroid was not functioning at all. There was a physical reason for her altered mental state. Once on treatment Lisa returned to her old self and was released (but now traumatised).
Saskia, 19 years old – Saskia was accused of choosing not to urinate (how is this even possible?). In the end, she was self-catheterising up to 30 times a day. It later turned out she had severe Nutcracker Syndrome. Since undergoing surgery, she has never used a catheter.
My Story
Aged ten, I made up my mind I was going to Oxford University. The same year I became seriously ill and from that point onwards hardly went to school. I suffered from recurrent pneumonias and aged 16 I underwent an emergency bowel resection. Nobody could identify the cause of my symptoms.
Studying became my coping mechanism. It was my distraction outside of patient life. I taught myself from hospital and home and somehow, was offered a place to read English Literature and Language at Jesus College.
When it was later suggested by my hospital consultant that what may help would be to ‘set little goals and stay motivated’, I couldn’t quite believe what I was hearing. Motivated? I was trying to do an Oxford degree from a hospital bed. When I shared this with him, I was then told I was putting myself ‘under pressure’ and that ‘stress’ was contributing to my symptoms. I couldn’t win; if I lay on the sofa all day, I was accused of not trying and if I introduced my studies, it was deemed too much to cope with. I learnt to pose a few logical questions:
“Just to clarify, are you saying stress can cause a recurrent pneumonias?”
“Are you suggesting stress is responsible for an emergency bowel resection?’
That’s some stress…
It eventually turned out I’d been living with 13 years of undiagnosed active Tuberculosis. I was put on 18 months of antibiotic treatment and finally, got my life back.
I’m pretty sure stress doesn’t respond to antibiotics…
In 2018, things deteriorated again when I started to display a long list of non-descript symptoms; leg cramps, flank pain, morning nausea, dizziness and exhaustion.
“I think it’s probably down to anxiety,” my GP said to me.
“Could you possibly do any bloods or refer me for more tests?” I asked.
The answer was no. I was referred to a psychologist who told me it was time to “adapt to life as a well person”.
But I feel so unwell, I thought.
Two weeks later I collapsed at home. Mum had to call 999.
“I think my daughter is going into adrenal crisis,” she told the ambulance.
I was, subsequently, diagnosed with Addison’s Disease. I would now have to take steroids for the rest of my life. I would have to wear a medical alert wrist band. I would have to carry a lifesaving emergency injection wherever I went.
It was time to adapt to life as an unwell person…
In 2022, my health reached a crescendo when I ended up in a London hospital for almost 3 months. Day one, medics were crying at the bedside as my body was ravaged by horrific convulsions that lasted for hours. When almost 3 months on they still hadn’t reached a diagnosis, it started to feel like I was in some way to blame.
“Do you want to be in hospital Tilly?” the doctor asked me.
I remember looking around the open ward that I dreamed of escaping every second of every day and thinking, ‘why would anyone want to live here?’ Nobody would choose this life.
The next day, they sent in a psychiatrist.
In the end I had to resort to going abroad to receive my lifesaving treatment. I document this journey on my Instagram @thattillyrose.
It has struck me that at every point on my medical journey, when no physical diagnosis has been made, there has been a jump to ‘it’s all in your head’.
The predictability is what’s most frightening of all.
‘Be Patient’, Tilly’s memoir of resilience, hope and finding strength in the face of adversity is available to order now.
Follow @thattillyrose on Instagram where she shares ‘chapters’ on the daily reality of life as a patient.