"It's absolute torture": 9 women share exactly what it's like to live with an 'invisible' illness.

One in every two Australian women is estimated to have a common chronic health condition.

One in two. That's 49 percent of women.

Meaning? If you don't suffer from a chronic health condition, chances are the woman sitting beside you does.

Because here's the thing – you don't have to *look* sick to be battling an illness.

From endometriosis to mental health illnesses, back issues and diabetes, the umbrella term ‘chronic condition’ offers up a broad range of health issues – often complex and non-communicable conditions that are scattered across a wide spectrum of illnesses.

Watch: Things guys need to know about endometriosis. Post continues below.

Many celebrities have shared their own experiences with invisible illness, including Bindi Irwin, who has opened up about her ongoing battle with endometriosis in the past.

The 25-year-old shared that she was "trying to remain a positive person and hide the pain" but decided to share her journey to help other women in pain.

She wrote: "For 10 years I’ve struggled with insurmountable fatigue, pain and nausea," she wrote alongside a photo of herself in a hospital bed.

"These last 10 years have included many tests, doctor's visits, scans, etc. A doctor told me it was simply something you deal with as a woman and I gave up entirely, trying to function through the pain."

Endometriosis is a condition in which the tissue similar to the inner lining of the uterus grows outside the uterus.

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"I'm aware of millions of women struggling with a similar story," Irwin continued. 

"There’s stigma around this awful disease. I’m sharing my story for anyone who reads this and is quietly dealing with pain and no answers. Let this be your validation that your pain is real and you deserve help. Keep searching for answers."

To help create a conversation around chronic pain, we asked nine women from Mamamia to share their journeys of dealing with an 'invisible' illness. Here are their stories.

 Maddie.

Image: Supplied

"By the end of last year, I'd lost count of the number of times I had been admitted to hospital. The cause? Stage 4 endometriosis. The pain was indescribable; excruciating to the point where morphine barely had any effect.

"To say this has impacted my day-to-day life is an understatement, and the fact that this is an invisible illness and one that some people think is "just a bad period" makes it a lot harder. To be honest, it is really frustrating having to constantly justify the way I'm feeling.

"I was lucky enough to be fast-tracked for a laparoscopy to remove the endometriosis from my insides. The surgeon was able to get it ALL and even though I'm only six weeks post-op, this has been life-changing and an enormous weight had been lifted off of my shoulders. Although this isn't a cure, I am hopeful that this surgery means flare-ups won't be as common and/or intense, which would mean no more sick leave from work and no more bailing a dinner or night out early to check myself into the hospital."

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"If you are a person suffering from this debilitating illness, I see and feel you! We have a long way to go in terms of diagnosis, awareness and a cure, however in my experience, speaking about this and connecting with others who are going through the same thing is reassuring and almost therapeutic."

Charlie.

"When I was 17, I was suddenly tired and sore all the time. Simple things like stacking the dishwasher, vacuuming the house or typing a late-night essay were all pretty impossible. My joints would ache to the point where I was left feeling like I had run a marathon; I would sleep all day, even after a proper eight hours' sleep at night, and I barely ate. 

"After seeing many specialists and trialling different medications with nothing working, I was diagnosed with chronic fatigue syndrome and fibromyalgia – both chronic illnesses and, for me, both debilitating in the early years.

"Following my diagnosis, I missed three months of my final year of high school, along with many social occasions, and I had to get special provisions at university. I eventually quit my retail job because it would get too painful. It would take me hours just to get out of bed each day because my arms hurt so much and I gained weight because I couldn't exercise. I was so unhappy.

"Five years on and I'm now managing the pain. I'm no longer on a truckload of meds (I'm actually not on any) and I exercise daily. I made a lifestyle change, and it works for me (I've written about my story in more detail, here)."

Isabella.

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"Around midway through 2021, I started to experience pretty bad chest pain on and off. Initially, I thought it was related to panic attacks, as I have experienced those before. But this felt different. On two occasions I ended up in hospital, the pain was so bad, mimicking what I believed a heart attack or having an elephant on my chest would feel like.

"After lots of medical appointments with GPs and specialists, X-rays, CT scans, blood tests, consultations with pain specialists, ultrasounds, heart check-ups and more, I was finally given a diagnosis in mid-2022: Chronic costochondritis. It’s inflammation of the cartilage that joins your ribs to your breastbone, basically resulting in stabbing chest and under-boob pain from time to time.

"I've had knee reconstructions before so I have a decent high-level pain tolerance. But on some occasions, the pain of the costochondritis has reached an eight out of 10 – crying, not screaming. As for how it happens, my doctors couldn’t give me much of an explanation – perhaps wear and tear, an injury from exercise I was doing. Commonly, it's a condition that does go away with time. For me, unfortunately, that hasn't been the case."

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"But I've learned how to manage the chronic pain. For me personally, that means seeing an exercise physiologist, swimming, having access to doctor-approved pain medication if needed and managing stress levels (which can exacerbate the symptoms). Interestingly, my doctors told me that this condition can be quite common in young women for some reason.

"Overall, it was an exhausting process, as is having a condition which is 'invisible' in a way. It's emotionally debilitating when the pain is bad, too. Fortunately, I only have flare-ups now perhaps once every two months, which is a massive improvement. It just shows that you never know what someone is going through physically, emotionally or mentally, because not all illnesses are outward facing."

Tamara.

"Two years ago I had an intense episode of dizziness. Basically, the room started spinning, and I fell to the ground. I threw up a few times from the spinning sensation and went to bed, enduring ongoing nausea and head spins for three days afterwards.

"Feeling extremely unwell and confused, my husband took me to the doctor and I was diagnosed immediately with benign paroxysmal positional vertigo (BPPV), a minor type of vertigo which has to do with the tiny crystals in your ear being dislodged. It can generally be treated with some basic exercises. But this turned out to be a misdiagnosis. About a month later, while working from home, the spinning returned. I would describe it like that moment when you've had too much to drink and you hit the bed, and everything around you is spiralling – but so much worse.

"When I googled my symptoms, I kept seeing 'vertigo'. But that apparently only lasted minutes and this was lasting for days. The worst episode came when I was at work, weeks before my wedding. I fainted in a meeting and when I came to, the spinning was out of control. I had a full-blown panic attack, I couldn't leave the bathroom and had to be taken in an ambulance to hospital.

"Desperate for answers, I booked into a top vertigo specialist who charged $1,000 for a consult and treatment. My husband and I decided it was worth it. He diagnosed me with a textbook case of vestibular migraine, which can be chronic and is often brought on by stress along with a combination of other factors.

"Two years on, I have tools to help me manage the episodes, but unfortunately it's not something that's easily 'treated'. Medications work for some people, but I've had mixed results. Lifestyle factors like reducing stress, keeping active and eating well (classic) are important, but there's no actual fix, which is a hard pill to swallow.

"I now live in constant fear of a random attack in the middle of my day or night, and it's so debilitating. It takes days to feel okay again. When I'm having an episode, I would do anything to make it end. It is absolute torture. Friends, family and my workplace have been very sympathetic and all now understand what's happening when I say I'm having an attack, and that I need days to recover. But to be honest, the outlook can feel pretty grim."

Sydney.

Image: Supplied

"I have endometriosis, and it took me more than a decade to be diagnosed. From my very first period (at age 10!), I had horrific period pain, but I was always told that was 'normal' and to be expected. It progressively got worse through my teens, to the point where I was taking days off school when I had my period because it was so painful.

"I have vivid memories of laying my head on the desk during class because I was dizzy from the pain and stumbling through the house holding myself up on the walls trying to get to my room to lie down. After being in pain for two months straight, I was FINALLY diagnosed at 21 after seeing a new (female) GP. When she heard my symptoms and history, she sent me off to a specialist.

"I'd already had a surgery at this point because I'd presented to hospital with pain a few times, They took my appendix out because they thought it was the issue, but it was totally fine. I've since had two surgeries, the most recent in July 2020, which has thankfully made a huge difference."

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"I still get hectic pain, but it's far more predictable now. When it was really bad, I was missing social events because of how unpredictable and debilitating it was, which was super isolating. I've been lucky that the pain has been manageable during past few years, but I have been noticing it getting worse in recent months, so now I'm just figuring out what my next steps are."

Lucy.

"I have an invisible illness. It's called palindromic rheumatism. It's a form of autoimmune arthritis and, to be honest, most days I don't even know that I have it. I'm not on any medication and I have no physical limitations, I just can't eat gluten or dairy – but half of my friends are lactose intolerant anyway so I'm not special.

"Symptoms can include pain around my joints, stiffness, soreness... probably all the things you've heard about arthritis, except that it is palindromic – meaning front to back – in nature, which is reflected in the symptoms. The pain jumps around from joint to joint as it pleases, leaving no lasting physical damage. 

"I've found a management plan that works for me and I'm entirely thrilled about it. But the symptom no one told me about is the way people's perception of me would change once they knew I had an autoimmune disease. Because, to some people, instead of being 'Lucy', I’m 'Lucy with an autoimmune disease'.

"It's one of the first identifying features they remember about me and rattle off in conversation. 'Oh, we can’t go to that restaurant because Lucy can't eat there.'

"I do have an autoimmune disease. It’s true. That's a fact and there’s no denying that. But I'd like to detach it from your perception of me, please."

You can read more about Lucy's illness here.

Emmeline.

"I was diagnosed with endometriosis about eight years ago. I was experiencing debilitating periods, and pain during sex that was getting worse. I worked casually in the stockroom at a clothing store at the time and often couldn't stand up straight (but had to work because I wouldn't get paid otherwise). My mum suggested endo as she has it, too, and I'm really glad she did because I had never heard of it before.

"I booked myself into a specialist at St Vincent's hospital in Sydney, who formally diagnosed me. It was already very bad so I was quickly booked in to have a laparoscopy to remove it. The surgery was successful and they also inserted a Mirena [hormonal contraceptive device] while I was under to ease my periods moving forward. Recovery was rough, though – I tried to go back to my work as a receptionist after a week but called my mum to pick me up about an hour in, as even just sitting was incredibly painful. But it's the best thing I've ever done – I haven't had a period since."

Polly.

"In June 2021, I was basically the fittest I'd ever been. I'd recently run a half marathon and I was in the gym five or six days a week. On the first day of the second Sydney lockdown, I went out for a walk and I just felt this electric pain shooting down my right leg. I couldn't walk another step. I had to get an Uber home, and I was panicking. 

"The next day it felt better, so I tried to go for a run and the pain was so intense it literally took me down. 

"Things went on like that for about a week until I eventually I went to see a physio, who sent me for MRIs of my hip and my lower spine. I was misdiagnosed at first, but eventually saw a doctor who diagnosed me with meralgia paraesthetica – a condition where the lateral femoral cutaneous nerve (the nerve that controls sensation in the top and the outer- to mid-thigh area of your legs) gets compressed either at the lower spine or in a behind a ligament in the groin. In my case, it was behind the ligament in the groin.

"I was sent for steroid injections, which can sometimes release the nerve so the condition goes away on its own. The steroid injections didn't help, though, and the pain kept getting worse and worse. I opted for surgery, but looking back I wish I'd waited, because that surgery made the pain 10 times worse. The pain had started on the right side but ended up on the left as well.

"A few months later, I ended up having another even more drastic surgery, during which they basically cut the nerve. I couldn't exercise at all. I had to cancel holidays. Going to work in the office was an ordeal. To anyone on the outside, it didn't look like anything was wrong. I was walking a bit more slowly, but I don't limp, I don't use mobility aids –everything else is fine in my body. So, that was hard. I think if I had a cast on my leg I would get more sympathy and understanding, but the fact is, you can't see nerve pain."

"Most recently, I went to the UK and saw a nerve injury specialist who discovered that during the second surgery, the nerve ending wasn't dealt with properly and was trapped underneath scar tissue. I've just had that fixed, but only on the right side.

"I'm still in a lot of pain, but it's very early days. I'm hoping for a positive result. But my experience with this chronic invisible pain condition has really opened my eyes to how ableist society is. If you don't look like you're in pain or you're disabled, you're treated completely differently."

Liv.

Image: Supplied

"I was diagnosed with Crohn's disease in 2016 and pericarditis in 2019. It took around six months of going to the doctor and telling them something wasn't right, pushing for tests/procedures, and being met with a brick wall because my symptoms weren't 'serious' enough. I once had a doctor look at me and say, 'There is nothing wrong with you,' and then he pushed a mental health test across the table.

"I started losing weight quickly/drastically and was (TMI warning) passing blood. I was immediately taken to the emergency department, where they finally referred me to a gastroenterologist. This took around four months, followed by another two months of getting into the gastroenterologist, doing all the tests and finally receiving a diagnosis.

"Being 16 and dealing with something quite gory and not very 'pretty' was incredibly lonely. I couldn't go to school for nearly all of Years 11 and 12. I sat at home while the rest of my friends continued living their lives. I couldn't eat solids and was on a mashed potato, broth and baby food diet for three months, as well as taking eight pills a day.

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"It completely ruined my body image. I was so deeply unwell and had yet I people saying things like, "You look amazing!" simply because I had lost weight. I found myself obsessing over this, thinking, 'I might be unwell but at least I'm skinny.' At an age where you're already very vulnerable to accepting your appearance, this was just the cherry on top.

"I still struggle with this, finding when I have flair-ups, I might get slightly excited because I'll shed a few kilos and have people compliment me on how I look, or even missing being so sick because I was thinner – even though my body was destroying itself and I couldn't be away from the bathroom for longer than 10 minutes."

"I remember sitting down with my high school principal to talk about what I needed from the school and how they could support me (at least, this is what I thought the conversation would be about). The first sentence that came out of his mouth was, 'I thought people with your condition were meant to be elongated and skinny.' I was already so self-conscious of people not believing anything was wrong with me because they couldn't see it, and that sentence from a principal made me spiral. My mum went in the next day and told him he was an idiot."

Jess.

"The hardest part of living with an invisible illness is realising that no one will ever understand the daily struggles you face. In 2014, the stress of the HSC was starting to take a toll on me, physically and psychologically. I was a nervous wreck and my body was copping the brunt of my anxiety.

"During the day, I was clenching my teeth, which led to head-splitting migraines and searing facial pain. As exams started, my jaw physically locked shut. I couldn't open my mouth any wider than 2cm. Eventually, I resorted to a soft food diet – say goodbye to chewing gum, steak, or anything remotely chewy. I was eating like an elderly lady in a nursing home.

"It took three different doctors, a chiropractor, a physiotherapist and two dentists to even get a diagnosis for my condition, and it's one you've probably never heard of. TMJD [temporomandibular joint disorder] is painful, compromised movement of the temporomandibular joint [TMJ] in the jaw. The TMJ is the 'ball and socket' that connects the jaw to the temporal bones of the skull, allowing you to talk and eat.

"The misalignment of teeth and/or teeth grinding and jaw-clenching typically lead to TMJD, however other causes include muscle overuse, arthritis and – in my case – high levels of stress.

"Of the many treatments I have tried and tested, two have proved more effective. Once a month, my chiropractor gives me intra-oral neuromuscular massage therapy. Yep, he pops on some gloves and massages the jaw joint from inside the mouth. It's awkward and painful, but it's a huge relief, releasing built-up pain and tension in the joint.

"At night, I wear an occlusal mouth guard, which prevents me grinding my teeth at night. The device cost more than $1,200 and probably makes me look like a rugby player, but hey, it works."

"Living with invisible illness and chronic pain is tough. Most TMJD sufferers I spoke to have felt alone, depressed and misunderstood. Fortunately, the more we speak about chronic illness, the more awareness we create, and with awareness come dedicated medical professionals who seek treatment options for patients, even for the rarest illnesses."

You can read more about Jess's chronic illness here.

Rebecca.

"I have endometriosis and fibroids. I'm 31 and had my first endo surgery in May 2022 – 11 years after my symptoms started and two years after endo was (thankfully) detectable on a scan.

"I've had horrific pain almost all of my adult life. Pain that feels like someone tearing my insides apart, barbed wire being pulled through my abdomen, hot flushes, terrible headaches, dizziness, blackouts, nausea and very heavy periods (resulting in iron deficiency anemia). Pain that left me writhing in pain for three out of four weeks of the month and would oftentimes leave me unable to walk or move.

"This pain has affected pretty much every aspect of my life. Socially, I would find myself arriving late, leaving early or simply not turning up to things cause I was in too much pain to move. It has also impacted my sex life, especially when on the dating apps – it's not the easiest thing to explain to a new partner that you could be in so much pain you won't be able to move for a while.

"Professionally, I have had to take a lot of days off, and at my former retail job, I'd often find myself hunched over in the back room. Economically, there are so many medications I take (and have taken since my pain started), not to mention all the medical appointments, scans, check-ups and expenses I have incurred – even with private health insurance my surgery cost me more than $6,000.

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"I had scans that confirmed my fibroids in my early 20s, but by the time I had those same scans again at 28, concerns around not only the number of fibroids I had but also the rate of their growth finally made the doctors take it seriously. During more extensive scans, they found a couple of areas that looked to be endometriosis.

"I had my surgery last May and couldn't believe how calm I was about it all. I just kept thinking whatever pain I felt post-surgery would be nothing compared to what I was already experiencing. It was such an oddly comforting and vindicating experience when my gynecologist woke me up the day after my surgery to tell me she had not only removed some of my bigger fibroids (four, when she thought she would only be able to get out two or three) but she also removed, 'lots and lots of endometriosis – lots and LOTS!'

"It was such a relief to have answers and to know that I wasn't imagining my symptoms."

Are you dealing with a chronic illness? Share your journey below – we'd love to hear it.

Feature image: Supplied.

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