‘I post photos of myself smiling on Instagram but I never have a pain-free day’

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When was the last time you were in pain? Whatever it was – a stubbed toe, sore throat, kidney stones – chances are you recovered. Now, imagine waking up in agony most days, and knowing it probably won’t ever go away.

That’s the reality for up to half of the UK’s population who live with chronic pain. And for many sufferers, life can be even more frustrating when your symptoms are often misunderstood, or worse dismissed because they’re ‘invisible’ to the naked eye.

So, to understand what it’s really like to live in constant pain, be it physical or mental, and to mark September being International Pain Awareness Month, here three people speak out about their conditions and how they try to cope.

Photo of Georgina HarveyBBC Three

“It feels like all my nerve endings are on fire”

Georgina Harvey, 28, from Berkshire has fibromyalgia: a long-term condition that causes chronic pain all over the body.

One morning in July 2016, I woke up as usual but when I tried to move, an excruciating pain surged through me. It was as though my nerve endings were on fire – and all I could do was cry out. My mum came rushing into my bedroom and rolled me onto my side, staying with me until the crippling sensation wore off. We knew I was having a fibromyalgia flare-up – but it was the worst I’d had since being diagnosed two years earlier.

My condition started with a need to click my neck when I was 19, after I’d recovered from viral meningitis. Then it grew to a piercing ‘pins and needles’ sensation in my shoulders, and a deep ache in my back. I thought it was down to poor posture but by the time I reached 21, the pain was almost constant.

I had X-rays, MRI scans and blood tests – but nothing showed up. I was prescribed strong painkillers, and my GP increased the strength whenever the pain became unbearable again. I described it as the worst possible stomach pain, but in my back, as well as an intense throbbing pressure in my chest that felt like it was going to explode through my ribs. When my next pain relief option was morphine, I was signed off work, and went to see a rheumatologist, which led to my diagnosis.

He explained what fibromyalgia was – a chronic pain and central nervous system disorder – but said there wasn’t a specific treatment or a cure, just ways to cope. I’d already spent years trying his suggestions – pilates, yoga, swimming, physiotherapy and cognitive behavioural therapy – and nothing had helped. As much as I was relieved to finally have a diagnosis, I was devastated that this was something I had to ‘live with’.

Today, the pain has spread to my hips and feet and I’ve developed stomach problems. Everyday things like talking on the phone, wearing a bra or simply sitting in a chair are pain triggers, and taking a shower can be exhausting. I never feel rested, because it affects my sleeping, and I get ‘fibro fog’ – a fuzzy-head feeling that stops you from thinking clearly when the body is in pain. I’ve always been shy but now I struggle even more to have conversations. Overall, I think it’s made me an anxious person because I’m constantly on edge.

And it impacts everything: work, exercise, socialising. The advice is to ‘keep moving’ but when I get a bad episode, I can’t do anything, so it’s a vicious circle. When I make plans, I have to think whether I’ll be sitting or standing and how long I’ll be out for. Most of the time, and if I can, I’ll push through the pain because I don’t want it to hold me back, or for friends to think I’m just ‘bailing’. But I often take myself somewhere quiet, usually a toilet cubicle, when the exhaustion and pain gets too much.

Little things can bring me comfort, though, like a hot water bottle or a soft blanket – I’m obsessed with things that feel nice as my body is so sensitive – and I love walking. I have to go at my own pace but it prevents me from seizing up and always lifts my mood. Last year, I left my marketing job in London for a local events role so that I could avoid the 90-minute commute and it’s made a difference.

Although I never have a pain-free day, some days it’s more bearable – and I remind myself there are people suffering with worse. My family keeps me positive, too. I live with my parents and they give me emotional support. My boyfriend also does whatever he can to help but I feel guilty when it affects our relationship. Recently, after we had a romantic meal out together, it was a chilly night as we walked back to the car and the pain from shivering caused me to almost collapse on the ground.

For me, it’s important to spread awareness because whenever I say I have fibromyalgia, no one’s really heard of it, and because it’s ‘invisible’, sadly there’s stigma. People have dismissed it and bosses have admitted they don’t understand. And in a way, I get it: I make jokes, I don’t limp and I post photos of myself smiling on Instagram. But those photos don’t show that I was on my strongest painkillers or that when I got home, I burst into tears. I don’t want to be defined by my condition, yes it’s part of me – but I’m determined to never give in to it.

Photo of Billie DeeBBC Three

“I learned to separate ‘me’ from the illness to manage the pain”

I’ve struggled to regulate my moods for as long as I can remember. My emotions can be so extreme if they’re not constantly managed. I feel everything so strongly. If a friend doesn’t reply to my messages for a day, I’ll think they have abandoned me and I’ll become deeply depressed and dysfunctional. Equally, when I’m excited about a date or achieving something at work, I can get so manic that it frightens people. I live with continuous anxiety, always worrying what will trigger my mood swings.

My parents went through a deeply traumatic divorce when I was five. As a teenager, I would drink a lot of alcohol as a way to cope with my intense emotions. When I started to question whether I had a mental health condition, I talked to my family and friends about getting a diagnosis. But they were worried it would make my life difficult. As in, I wouldn’t be able to get a job and people would judge me. The shame prevented me from getting help. I ended up isolating myself and became trapped in a cycle of self-hate for a long time.

Then, in 2015, my long-term boyfriend and I broke up around the same time I got made redundant – and I hit rock bottom. I completely shut down: I couldn’t even get dressed, I would just wake up and cry all day. After two months of not leaving the house, and having horrific nightmares where I’d wake up screaming, I realised I needed help. I started seeing a private psychotherapist, which gave me support but it was so expensive, I had to stop the sessions.

Before I left, my therapist urged me to see a doctor but because I was drinking excessively, smoking weed and I had intrusive thoughts, I was terrified that I would get locked up in a psychiatric hospital against my will. It doesn’t happen like that in real life, but that irrational thinking meant I ignored the advice and convinced myself that I would get better on my own.

I didn’t. It got worse. Earlier this year, I was walking to work with voices in my head shouting that I was worthless. I felt like I didn’t want to live anymore, so I called the mental health crisis line right there on the street.

I had to prove that my drinking and drug use was under control before I was referred onto a mental health service or psychiatric hospital, and my GP wouldn’t prescribe medication until I had seen a psychiatrist, so I checked myself into a free drug and alcohol peer support group. Knowing I wasn’t alone was a massive boost to my self-worth. After attending meetings for three months, I was referred to the local psychiatric hospital.

When I first heard the words “borderline personality disorder” (BPD), I freaked out because it sounds horrendous – and it’s even worse when you first read about it. There are so many ignorant articles online. But when I researched the information via mental health charities, I read that it could be linked to childhood trauma, which helped me understand that it wasn’t my fault. Most importantly, I could separate ‘me’ from my illness, and find ways to manage the mental pain. I was also diagnosed with complex post traumatic stress disorder (PTSD), which explained the nightmares and anxiety, and prescribed anti-depressants. Within two weeks my moods stabilised and I haven’t had intrusive or suicidal thoughts since.

If there’s one thing I’ve learnt from my condition, it’s to never feel ashamed to ask for help. If you broke your leg, you wouldn’t ‘wait’ for it to get better, you’d go to hospital – it’s the same with psychological pain. I just wish I did it sooner. I’m still going to my recovery support group, and I’m on a waiting list for dialectical behaviour therapy, a type of talking treatment specifically for people with BPD. I’m working through everything, and the anxiety is there most days, but for the first time in my life, I feel positive – and I have hope.

Click here for help and support if you’ve been affected by any of the issues in Billie’s story.

Photo of Joanna HyndsBBC Three

“A headache is a nuisance, a migraine is debilitating”

Joanna Hynds, 23, from Belfast suffers from chronic migraines.

As soon as my alarm goes off, the first thing I think is: do I have a migraine? Or worse, is one coming? It starts with flashing pains in one side of my head that grow so severe, it feels like someone is smashing my head from the inside. Sometimes I’m sick with them but light sensitivity is the worst symptom. I could pass out from the pain shooting through my eyes if the light around me if too strong.

I was diagnosed with chronic migraines during my AS Levels at school, but I’d been living with headache after headache since I was about 15. During that time, doctors said it could be related to hormone changes, and sometimes they said it was tension or sinus issues. But by the time I reached 17, the pain was so acute and frequent, I was missing a lot of school, and my parents were worried. After a brain scan ruled out anything sinister, I was given my diagnosis.

The International Headache Society defines chronic migraines as having more than 15 headache days per month over a three-month period, of which more than eight per month are of migraine level. These days, I have a migraine at least once a month. Some months I have one every week, and within that week one migraine can last for days.

I’ve become better at preventing them. Knowing what triggers one for me – stress, bright lights, noise, caffeine, watching TV for a long time – does help. I’ve also tried herbal remedies and quitting caffeine but there’s no cure. It’s a chronic illness and, for me, a constant battle. I’ve tried different medications but because there are several types of migraines, it’s hard to treat. Six years on, I’ve still not found long-lasting effective treatment. I can tolerate a medium one for days with painkillers, so that I can go to work and not ‘miss out’ on life. But if I have a strong one, nothing or no one can help me. I have to give up, and shut myself in a dark room until it has gone.

It can get me down emotionally, and while I’m lucky that my family, friends and boyfriend are supportive, not everyone understands. When I once told a boss that I had migraines, she was like, “I’ve never heard of this.” Some people think it’s ‘just a headache’, but whereas a headache is a nuisance, a migraine can be debilitating.

I’ve spent the last year working in a museum. It was physically gruelling to be on my feet full-time, but it gave me the confidence to deal with, and tolerate, my condition at work. I’m also about to start a masters degree in journalism, and I’m aware it’s going to be intense, and I’ll be in front of a screen most days – but it’s also my dream. I try not to let my condition stop me doing anything and all I can do is make the most of those rare mornings I don’t wake up with a migraine.

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