If you look around in any busy place, there’s probably someone living with an illness or disability.
But their condition is invisible. You would have no idea that anything is wrong.
They might be living with debilitating pain or struggling with symptoms but when they use disabled seats, disabled bathrooms or disabled parking spots, they often get challenged and are told ‘You don’t look sick.’
That’s the name of our series. Each week we speak to someone with an invisible illness or disability about what it is like living with their condition.
Katy Johnston, 23, from Aberdeen, has stage 4 endometriosis, where tissue similar to the womb lining grows in other places like the ovaries, fallopian tubes and bladder.
(Picture: Wattie Cheung for Metro.co.uk)It can cause severe period pain, very heavy periods and can affect fertility. There are four stages – stage one is minimal, stage two is mild, stage three is moderate and stage four (Katy’s type) is severe.
Katy had been experiencing symptoms since she was 16 but was not officially diagnosed until April last year – a problem that is very common among people with the condition. On average, it takes seven and a half years for a diagnosis.
Katy’s condition became so severe, she could no longer walk more than a few paces without help and she wasn’t able to leave her house for months.
Since her teenage years, she had suffered from periods that were so painful she was forced to take time off work, school and university almost every month.
But after her graduation from her undergraduate degree, she started a masters in multimedia journalism at Glasgow Caledonian University and the pain intensified and started to affect her almost every day, rather than just during her period.
She explains: ‘The pain that I had willfully ignored every month for years started to linger and it became harder to pretend what I was experiencing was ‘normal’.
What are the symptoms of endometriosis?
Symptoms vary from person to person but some of the most common include:
Painful, heavy, or irregular periods
Pain during or after sex
Painful bowel movements
‘By this time, it was common practice for me to pass out and end up in A&E demanding morphine every time I got my period but – of course – I didn’t speak about it that much because speaking about the pain would mean talking about my period and admit that I couldn’t ‘just get on with it’, like every other girl I knew seemed to be able to.
‘Eventually, the pain was daily. It felt like stabbing. I was unable to stand up, I would black out and was sweating from the pain. I gained and lost over two stone in the space of a couple of months and was vomiting upwards of six or seven times a day.
‘I went to my doctor who at first suggested what I might be experiencing was bulimia (very unhelpfully) and I was eventually referred for scans and an MRI which revealed I had several cysts on my ovaries (endometriomas). At this point, I was put on a waiting list for surgery.’
Despite living with the pain for years, Katy says that the lack of visible symptoms and the stigma around talking about periods led her to hide her condition for a long time, until it became too much for her to bear.
Even when things deteriorated, the response she had to how she looked meant she still struggled to speak to anyone about what was happening.
She explains: ‘When my endometriosis symptoms were coming to a head, I was losing weight rapidly.
Katy in hospital (Picture: Katy Johnston)‘At this point, all anyone ever said to me was that I “looked great”. I felt confident and I am horrified to say that for a while, I was willfully ignoring the symptoms of my condition because I was so delighted to be thin.
‘I was overcome with the physical reaction to being sick and I was experiencing black out pain on a daily basis without knowing why. I thought I was dying, but I was skinny and people thought I looked good – that made it a lot harder to speak up.
‘Now, people are always shocked when I tell them I am as sick as I am because I don’t come across as poorly. I don’t present as a sick person but I am and this can be frustrating.
‘People don’t get it that I’m not cured that the pain isn’t over just because I had an operation 11 months ago.
‘People don’t get it that when I say I’m having a hot flush I mean – get out of my way I am dripping in sweat and dizzy and am going to need a fan and a jug of water asap.
‘People don’t understand that the reason I am dressed up to the nines and going 100 miles an hour is because I am terrified about what will happen when I stop, or when my body forces me to stop.’
When her symptoms got worse, Katy had to put her life on hold to try to deal with the condition, because she was too ill to leave the house.
Katy, two months after surgery (Picture: Katy Johnston)‘I had just started my dream course at university, studying to become a journalist but was forced to stop before my exams as I simply couldn’t function with the pain,’ she says.
‘It was the same pain that I had ignored for so long but it had grown persistent and was now (coupled with the vomiting) totally unmanageable and unavoidable.
‘It was like I’d been slapped in the uterus and forced to acknowledge that this was more than just a bad period, this was something more sinister and there was nothing I could do but wait for an answer.
‘I couldn’t leave the house. I couldn’t work. I couldn’t do anything and I was in Glasgow, three hours away from my family, waiting for an operation. I was calling up my surgeon’s secretary every day asking if there had been any cancellations so I could have an answer about what was going on and why my body was failing me like this.
‘Eventually, there was a cancellation and I got my operation on 4 April 2018.’
Katy had surgery to cut away patches of the endometriosis tissue and it has improved her quality of life but she still does have to deal with the effects of the condition as there is no cure.
She was put on a course of drugs which stimulate a short-term medical menopause, which suppresses ovulation and therefore the spread of the endometriosis. Katy expects to be menopausal for about a year but she may need more surgery in the future to remove the tissue as it develops.
She says: ‘This was a pretty bizarre treatment plan to accept. It basically meant that I was experiencing hot flushes, night sweats and all the trappings of being a menopausal woman at 22-years-old.
‘It was surreal but worth it (and a great icebreaker with all of mum’s pals). This treatment allowed me to re-start my life in the way that I’d been dreaming of for all that time shut up in my flat unable to function when things were really bad.
‘Now, on a good day, I can feel invincible. I am back at university (finally) and working towards my final exams.
Katy now works as a radio presenter and is completing her masters in journalism (Picture: Katy Johnston)‘I am working as a radio presenter and a writing freelance, I’m in a choir, I am able to get out and about and see my pals, spend time with my family and live my life.
‘I also run a community page on Instagram supporting other women with endometriosis and have met some amazing, strong, empowering women through that.
‘I’ve come really far and I’m actually really proud of myself for where I am now and the way I’ve really thrown myself back into life.
‘It’s a year since I was shut up in my house in agony and uncertainty before my operation, and in that time, I have done all I can to support other people with/with suspected endometriosis.
‘I’ve launched a platform called Endo Silence Scotland that supports thousands with this condition, made recommendations at Scottish parliament and given a talk at Strathclyde University about periods and female empowerment.
‘I presented my first live radio show and have since presented numerous shows on Capital Scotland, and now I’m working on a campaign with Standard Life that could really change the game for employees suffering with this condition.
‘Some days I feel really grateful for the perspective getting sick has given me – I will never take my health for granted again. I will never take being able to walk and leave the house and do anything I want for granted.
Katy with her mum (Picture: Katy Johnston)‘I’m also certain I’ll never allow anyone to convince me I don’t know my own body and my own mind. I feel more connected with my body now than ever, now that I understand its limits and have made sense of my pain.’
Although Katy has had many positive moments since her diagnosis and surgery, she says that she still has bad days.
‘On a bad day, I’m menopausal but still bleeding,’ she says. ‘I’m depressed and have breakthrough pain that stings like a stabbing reminder that I could be back in that place and become that sick girl again at any moment – that reminds me this could all be too good to be true.
‘On a bad day, I have to accept that I’m actually not invincible and that I’m reliant on a cocktail of seriously strong drugs and hormone blockers to achieve any semblance of normal life.
‘On a bad day I am acutely aware that I might be carrying broken parts and that my body has been through a lot and that my willful ignorance (my not wanting to talk about period pain for so many years) contributed towards getting me here.
‘On a bad day, I am aware that I may never be able to have children. I’m 23, I’m young and I am hopeful but my endometriosis means that the white picket fence dream of being a mother might not be on the cards for me.
‘That hurts a lot. It hurts me and my partner. It hurts my mum. It shouldn’t but it makes me feel like a failure before I’ve even got to trying.
Katy with her boyfriend (Picture: Metro.co.uk)‘On a more basic level, on a bad day I can’t move from bed. I have to accept that today is a non-start day and admit that I’m not capable of any more.
‘I am furious that there is still no cure, so little awareness and so little promise of change on the horizon. I’m determined to change that.’
Katy is fighting to raise awareness of the condition as she wants other women to feel able to speak openly about what they are going through to avoid it getting
She explains: ‘The online community has been incredibly helpful for me. Starting Endo Silence Scotland was one of the best decisions I’ve ever made.
‘There’s now thousands of women using that community to share their experience, advice, have a whinge. It’s been essential to my mental recovery.
‘Awareness is key. Why is it that 20% of the public have still never even heard the word endometriosis when our numbers equal a tenth of women – a figure on a par with diabetes in our country?
(Picture: Wattie Cheung for Metro.co.uk)‘What makes it so that a condition that affects SO many can still take an average of 7 ½ years to diagnose? If you’re lucky.
‘Why is it that the fog – the stigma – that is now – thankfully and deservedly shifting over issues of sexuality, gender, mental health, sexual violence is STILL circling around what is STILL slurred at as ‘hysteria’ – ‘women’s troubles’.
‘It’s frustrating and it’s damaging and we are raising a generation of young people to be ignorant about a condition that they will most certainly encounter in some way at some point in their lifetime.
The picture of Katy in the exhibition of photographs by Rankin for Endometriosis Awareness month (Picture: Beyond the Invisible exhibition)‘I have made it my personal (and professional) mission to raise awareness about endo and dismantle the stigma surrounding periods and women’s health more generally but we also need practical support, education, more effective diagnosis and treatment and understanding amongst our friends, employers and tutors.
‘Endometriosis is not just a bad period – it’s a life sentence that means decades of agony, infertility, pain during sex, surgery, IBS, depression and there is no cure.’
For Endometriosis awareness month, Katy is featured in an exhibition held by Standard Life in partnership with Endometriosis UK. Beyond the Invisible features portraits by internationally-renowned portrait photographer Rankin and will explore the lives of those suffering from the condition.
The ‘Beyond the Invisible’ exhibition will be at La Galleria Pall Mall, 5b Pall Mall, 30 Royal Opera Arcade, London, SW1Y 4UY from 21-28 March, open to the public from 11am-5pm.
It will move to Stills Gallery, 23 Cockburn Street Edinburgh, from 1-8 April, open to the public every day from 11am – 5pm.
You Don’t Look Sick is a weekly series telling the stories of people with invisible illness and disabilities. Next week, we speak to Tas who has Ulcerative Colitis.
How to get involved with You Don’t Look Sick