You Don't Look Sick: 'People need to stop tutting when I use a priority seat'

Living with an invisible illness means dealing with symptoms every day – but no one can see them.

You Don’t Look Sick is a series that explores what it’s like to live with a hidden condition.

Hayley Jordan, 28, is originally from New Zealand but now lives in Manchester. She lives with Ankylosing Spondylitis (AS) and Primary Sclerosing Cholangitis (PSC).

AS is a type of arthritis that particularly causes inflammation to the joints in the spine but can affect other parts of the body.

PSC is a progressive liver disease where the bile ducts inside and outside the liver progressively decrease in size due to inflammation and scarring.

Hayley was born with the HLA-b27 gene, which means she’s more at risk of developing autoimmune conditions.

She was diagnosed with AS in early 2015 but had been experiencing symptoms since she was 17. Later the same year, she was told she also had PSC.

She explains: ‘I’ve always had some “back problems” since I was around 17 years old. Stiffness and pain, especially after waking up in the morning.

‘At the time we always thought it was just because I’m rather tall (I’m almost 6ft) and often have poor posture like many tall people do.

‘It never really got out of hand, I had periods of back pain and then periods of being fine.

‘I remember travelling around Japan in 2013 and just thinking the beds were really hard and they were killing my back until I was up and walking for a couple of hours to loosen up.’

In 2014, her pain started to get much worse and she thought it could be something more serious.

‘I was going to the gym a couple of times of week, working full time, and struggling to have the same range of motion that I used to,’ she says.

‘It would be very painful to get up in the morning, wincing and hobbling around my apartment until I could get loosened up enough to walk upright.

‘I thought that perhaps I’d damaged my spine in some way, a disc issue maybe, so I went to my gym physio and we started doing some investigations and strengthening.

‘After a few sessions of it not improving, he referred me to a senior physio.’

But following three months of sessions, Hayley wasn’t improving and her physio referred her to a sports doctor.

He felt something wasn’t right and carried out blood tests and an MRI scan to see what was happening.

Hayley says: ‘Blood tests were normal, MRI was less normal, and I was referred to a rheumatologist.

‘When I got the referral letter I had to Google what a rheumatologist did, and then I couldn’t believe that I would have to be in any way involved with an arthritis specialist. I thought “Isn’t that for old people?!”’

She had three months of weekly blood tests, genetic tests, X-rays and another MRI before she was finally diagnosed with AS.

‘I was extremely lucky,’ Hayley says. ‘My rheumatologist Rebecca was proactive and truly cared about my health, she wouldn’t stop until she got her answer.

‘I have close friends who have autoimmune arthritis and it took months and months from their first specialist appointment for their rheumatologist to believe the pain they were experiencing as they were “too young” to have such severe arthritis.

‘I remember being somewhat relieved on one level – that I had a diagnosis and now at least I knew I wasn’t making the pain up, or pretending that it was worse than it was. The chronic, life-altering pain I felt was real and it could possibly be treated.

‘Then set in the reality of what this disease meant. I struggled with the vision of me being in a wheelchair at 45 for a long time.’

By then, it has been 10 months since Hayley started to experience her first symptoms and she was in a lot of pain. She found that the condition was having an impact on her physically and mentally.

She says: ‘I was in daily 6-7 out of 10 pain, struggling to sleep, unable to stand or walk for more than 10 minutes, and my mental health was taking a serious toll.

‘Day to day the pain was pretty difficult to manage. I was struggling to sleep more than 4-5 hours a night, sometimes having to sleep propped upright with pillows to relieve the pain in my spine.

‘Standing for longer than 5 minutes was very uncomfortable, walking for longer than 15 minutes turned me into a limping, painful mess.

‘I remember struggling with getting up and down from the toilet, having to hold onto the walls and hold my breath as I lowered myself.

‘It’s incredible how deeply connected physical health is to mental health, ever since that year of pain and the ongoing chronic nature of my illnesses since, I’ve constantly had to keep on top of my anxiety which had never really been a part of my life until then.’

To try to relieve the flare, Hayley started trying a different medication, including a weaker chemotherapy drug (methotrexate).

She needed regular blood tests to ensure that they weren’t causing harm to the rest of her body – it was one of these tests that led to her second diagnosis.

‘I was overseas and got a call from my mum, who got a call from my doctor saying to stop my medication immediately. Turns out my blood tests were showing extremely high levels across my liver tests and something was wrong.

‘When I got back to New Zealand, there began another six months of investigation thanks to my amazing rheumatologist who wouldn’t give up trying to find the cause of my illness.

‘The three suspects were autoimmune hepatitis, drug-induced liver damage (from the huge amounts of anti-inflammatories I was taking to manage my arthritic pain), or a scary rare disease called Primary Sclerosing Cholangitis.

‘I remember reading that one on Google before I was diagnosed and saying to my mum “Well as long as I don’t have that one I’ll be happy!”

‘During this time I wasn’t able to be treated for my AS until they knew what was going on, so I had to keep popping diclofenac twice a day to take the edge off and maybe get some sleep.’

In August 2015, Hayley was told the other conditions had been ruled out and it looked like she had PSC, which was confirmed a month later.

She says: ‘I often say to people now that my arthritis is “child’s play” and it’s the PSC that we have to worry about.
‘I remember being told by my rheumatologist that PSC is probably going to be one I was diagnosed with and as such, she’d refer me to a gastroenterologist to start that journey.

‘I pretty much lost it in the clinic; hyperventilating, crying, struggling to breathe. I had to leave and go to the hospital bathroom so I could have some privacy while completely shutting down – ugly crying, curled up on the floor, wailing to my mum on the phone, it was awful.

‘It still makes me upset to remember that day. PSC is considered the “black box” of liver disease – there’s no proper cure, no treatment plan, it was lucky I was even diagnosed so early on in the disease as many times its asymptomatic and people are diagnosed only in the later stages.

‘10-15 years from diagnosis to transplant said Wikipedia, and I was only 23 so that felt way too soon.’

Hayley started to see a psychologist who helped her come to terms with her diagnosis.

She says: ‘It helped me accept my circumstances, grieve for what I had lost, and eventually be more positive when thinking about the future.

‘It was a huge step forward in learning to heal. I learnt the life is never guaranteed to anyone, maybe I’ve had some shitty luck, but I can either sit in my shitty luck or I can choose to move into the next day with as much energy and positivity as I can manage.’

Now four years on from her second diagnosis, Hayley has both conditions under control and is currently asymptomatic.

Occasionally she still has bad days, where she suffers from fatigue, pain and difficulty moving, and she knows she could have a flare-up at any stage.

She says: ‘Currently my good days are 9/10, and I’m very lucky. When you’ve experienced being actively sick, in and out of doctor appointments, doing invasive tests and procedures, anything better than that is a good day that you very quickly become grateful for.

‘My AS is treated with a fortnightly “biologic” injection that I administer myself, it suppresses my immune system enough that I have very little pain in my spine day to day.

‘I still find it difficult to stand for long periods, anything more than an hour and I’m having to find a seat – concerts/festivals/long queues are a nightmare.

‘The injection also makes me more vulnerable to sickness, so I get infections a lot more often now and suddenly developed hayfever. Herd immunity is something I rely on!’

‘Some days I’m still a little stiff and so I vape high-grade CBD to take the edge off – it works amazing, I can feel the ache slip away in a matter of minutes.

‘I suffer fatigue more than your average 20-something. If I have a busy weekend or a late night it can have a lasting effect for the rest of the week.

‘It means I need to look after myself more and take recovery days following busy periods when I know I’ll need to rest.

‘I came to the UK to travel and meet new people, and when I go on holiday I have to pace myself and spend a little more on accommodation sometimes to avoid hostels where it’s a bit more uncomfortable or loud – sleep is my saviour.’

Because both her conditions are rare and invisible, Hayley finds that people often don’t understand the impact they have on her life.

She says: ‘I don’t often tell people that I’m chronically ill. When I do, I usually say it in a very matter-of-fact and casual way that most people look a bit bewildered and may ask some more questions, which I never mind answering.

‘Most people would say “You’d never know!” intending it to be in a nice way – that I look fit and healthy and it’s a surprise that I’m chronically unwell, which I understand. I tend to judge people on their intention rather than on the words themselves.

‘Just before I was diagnosed, an ex-boyfriend didn’t believe that my symptoms were solely arthritis, despite all the tests and doctors heading in that direction.

‘He thought that I needed to exercise more and lose weight, and that’s why I was so sore all the time. He’d also give little side remarks whenever I wanted to take medication to help the pain.

Because her conditions aren’t visible, Hayley sometimes avoids using priority seats or disabled bathrooms, even during a flare-up, because she worries how other people will react.

She says: ‘I’m very grateful in that my illnesses are truly “invisible”, unless my arthritis is flaring up at which point I’ll have a slight limp when I walk. In this way, I very rarely get judged for how I look or when I’m out.

‘This is a double-edged sword – I don’t look sick, therefore I feel like people are less likely to believe me if I tell them I need help.

‘I don’t want to have an argument or a judgemental look in public. There have been times where I’ve been sitting in a priority seat and grateful for the pain relief on a bad day, but stood up for someone who visibly needed it more – someone with a cane or crutches or a parent with young children.’

She also struggled with assumptions people make about her because of how she manages her conditions.

She explains: ‘One thing that bothers me is that I can’t drink alcohol due to my liver disease. That always causes strange looks and further questioning.

‘Some people will assume I’ve had a drinking problem or am hiding the real reason why I won’t drink. It’s virtually unheard of for a young person to turn down a drink, so people tend to be sceptical and don’t take a simple “no thanks” for an answer.’

Hayley wants to see people be more aware of people living with invisible illnesses and to be more compassionate when they need help.

She says: ‘Awareness is number one. Then people in public will be less likely to give a tut or make side remarks when someone uses the priority seat or a disabled parking space.’

How to get involved with You Don’t Look Sick

You Don’t Look Sick is Metro.co.uk’s weekly series that discusses invisible illness and disabilities.

If you have an invisible illness or disability and fancy taking part, please email [email protected].

You’ll need to be happy to share pictures that show how your condition affects you, and have some time to have some pictures taken.

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