Over 13.9million people in the UK live with a disability.
But many of them have invisible illnesses – and from an outsider’s point of view, they look completely healthy.
You Don’t Look Sick is a weekly series that explores what it’s like to live with a hidden illness or disability and how different people cope with their symptoms, as well as the stares and judgement from strangers.
Hayley Ray, 30, from Shepherds Bush, London, has endometriosis and polycystic ovary syndrome.
Endometriosis occurs when tissue like the womb lining grows elsewhere. PCOS is a condition that affects how the ovaries work as they are covered in fluid filled sacs.
The condition means Hayley has suffered with severe period pain every month, since she was 12 years old.
She missed a lot of time from school and sometimes the pain is so severe, she collapses in the the street.
But she says she feels that because her conditions are put down to ‘women’s problems’, people are not always understanding.
She tells Metro.co.uk: ‘I got called into a HR meeting once and asked what was going on. I explained myself and the pain my period left me in and they turned around and told me; “You have to man up, take some paracetamol and just get on with things”.
‘I remember bursting into tears and before I could say anything they told me; “You don’t even look sick”
‘When I’d collapse in public I had a lot of people say; “stop being over dramatic”.
‘When people don’t understand what’s going on they will usually form a negative opinion because they’re not the ones experiencing it. It’s easier to judge, than to ask questions.’
Hayley first experienced pain when her periods started at the age of 12 but it took eight years before she was diagnosed.
She says: ‘Growing up it affected every aspect of my life, I had to plan my life around my period. At the age of 13 my periods started becoming heavier.
‘The suffering it caused was unbearable – the heavy bleeding, cramps, clots and sickness. I ended up passing out on several occasions in loo cubicles, and public places.
‘I started to make excuses on why I couldn’t hang out with my girlfriends on the weekends or why I couldn’t attend birthday parties or events.
What are the symptoms of PCOS?
- irregular periods or no periods at all
- difficulty getting pregnant as a result of irregular ovulation or failure to ovulate
- excessive hair growth usually on the face, chest, back or buttocks
- weight gain
- thinning hair and hair loss from the head
- oily skin or acne
NHS
‘No one seemed to understand the pain I would endure each month.’
Hayley remembers being sent to school with medication for weeks before, during and after her period to help with the pain.
‘It didn’t just stop there. The pain I’d experience in my uterus was a dull, stabbing pain that seemed to attack a week or two before my period.
‘I’d also experience dizziness just days before my period was due and these unbelievable intense headaches.
‘When I’d come on my period, it was heavy, painful and I couldn’t move. Walking became crawling and I experienced leaking through sanitary products.’
Hayley’s mum would take her to the GP but every time she was told it was ‘just period pain’ and she would be offered more painkillers.
She says: ‘Every time I went into that doctor’s room, I knew I wasn’t being taken seriously. I knew they thought I was being ‘over dramatic’ and that they thought I was some kind of hypochondriac.
‘The pain crept into family events, holidays and social gatherings with girl friends. Some days I was unable to move from the intense pain and I felt like this illness I had experienced was slowly starting to take over any hope I had for the future.
‘Unable to seek answers from medical practitioners, I didn’t know what to do.’
The pain meant Hayley was missing school and wasn’t able to take part in her hobbies any more. She left school at 16 and moved to a performing arts college – but the symptoms were got worse.
‘Most months I’d be sick and pass out during dance, acting classes, and in locked toilet cubicles from the pain I experienced,’ she says.
‘Unable to walk, I’d be wheel-chaired to the sick bay area and my my mum would make regular driving trips to Stratford-upon-Avon to collect me.
‘My mum took me to doctor and he decided to prescribe me the Pill as it was the next medication he could prescribe me.
‘The pill masked the symptoms and helped for a couple of months with the pain, however, it returned only to extend my periods and left me with heavy, clotted bleeding.
‘Taking time off each month, I was bedridden, unable to walk and weakened from the pain my period left me in.’
She eventually graduated, moved to London and got her first job in television at 18 – but working full-time made her symptoms even more difficult to manage.
‘I’d take time off work monthly unable to move and changing my sanitary products every hour due to heavy bleeding.
‘I would also wake up in the night down the the stabbing pain that would suddenly sharpen in my uterus.
‘I once had to press the emergency button on a tube as I experienced so much pain.’
After the HR meeting where she was told to ‘man up’, Hayley eventually left TV to take some time out.
At 23, she took a job in Birmingham, and it was there she was eventually diagnosed with both conditions that had taken over her life.
She explains: ‘After two weeks of starting my role, I caught my usual morning train like into the city centre and when I got to my station I felt a sharp, sudden stabbing pain from my left ovary.
‘It went away, and then came back much quicker and sharper.
‘It felt like a fire was spreading over my uterus and then eventually ended up taking spreading into the rest of my limbs, I felt a sudden dizziness and nausea overcome me and somehow made it into the office. In pain I screamed out loud to one of my colleagues.
‘I can’t really remember much from that moment as I passed out from the intense pain and woke up with a team of paramedics around me.
‘They asked questions, suggested I could have appendicitis or was experiencing an ectopic pregnancy.’
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
- Infertility
- Painful bowel movements
- Fatigue
Endometriosis UK
Hayley was rushed to A&E in an ambulance and after tests and scans, she was diagnosed with a suspected ruptured cyst.
But desperate for answers, Hayley booked a private gynecologist Miss Shrini Irani to try to find out what was causing her so much pain.
Miss Irani insisted Hayley needed an internal examination, where they detected and picked a couple of cysts on both ovaries and also some scar tissue in her uterus area.
Further laparoscopy surgery found that the cyst had taken over her left ovary, and it was 10cm by 10cm.
Finally getting a confirmed diagnosis of endometriosis and PCOS, Hayley was able to look at ways to treat the conditions.
She says: ‘I decided to book myself in for some food allergy tests with a specialist. A couple of weeks later when I received my results I was diagnosed with a gluten and wheat sensitivity and lactose intolerance.
‘From that day I eliminated all wheat, gluten, dairy, processed sugars, additives and processed foods. This certainly helped control and began to eliminate some of the symptoms that I’d suffered in painful silence over the years.
‘I also started to exercise, found yoga and spinning classes which also seemed to control my monthly symptoms.
‘I’d try and get into nature as much as I could too and started looking looking into more holistic ways I could treat the symptoms. I started taking magnesium and supplementing with fish oil.’
She had further operations in 2015, after moving to New Zealand but moved back to the UK in 2017 to spend time with her ill father.
Hayley says that since then, her symptoms have been much better controlled. Now working as a registered health coach, she helps other women put plans in place to manage their health.
She says: ‘Don’t get me wrong. I still get symptoms but I’ve managed to control them and find ways to manage them.
‘I’d say exercising, eating mindfully, remembering food = mood and supplementing with magnesium, fish oil and B12 has helped me.
‘I’ve also found meditation has really helped my symptoms as breathing allows the body to calm itself.
‘Through my own journey of health battles, and the breakdown of a relationship, I became interested in the healing power of food, self-care and development.
‘I’m now a registered health coach. I’ve developed various programs and 1:1 coaching programs to help women on a daily basis.
‘I support women transform their lives from a place of pain into a place of power.
‘It’s such an empowering and beautiful experience to be part of and I’m so grateful that I’ve been able to transform something that once had such a negative impact on my physical, mental and emotional health into such a positive one.
‘I love that we get to create and rewrite our stories whatever the circumstances we get to break free from the heroine and become our own hero.
She says she has had a lot of support from people she has met through her work, as well as other people with the conditions she has met online – after years of feeling incredibly isolated.
‘Up until I started getting answers I felt extremely isolated. My parents were the only two people who I could turn and talk to.
‘Now, I’ve met so many other women from connecting over social media – thank goodness for Instagram. I’ve been able to meet great women with such empowering stories and you’re able to create an online community.
‘My business is mainly online, so I get to connect and reach out to women who may need my support. There are also great charities such as Endometriosis UK who are doing some amazing things right now too.
Although Hayley says that we have come a long way when discussing illness around periods, she wants to keep talking about it to break down the stigma.
She says: ‘There’s still a long way to go to get the stigma around painful periods recognised. It’s all about healthy, honest and open conversations.’
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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