CHRONIC PAIN
When we become ill or experience a physical trauma, for most of us the pain is eventually removed as we heal. For a large number of Australians, however, their physical pain is permanent and they must learn to live with it.
Three women shares their experiences with MiNDFOOD.
One in seven Australians is currently living with chronic pain, according to Pain Australia. More than half (53.8 per cent) of these are women. Chronic pain is defined as pain that lasts for longer than three months. Under the umbrella of chronic pain also sit many invisible illnesses. In fact, statistics show that suicide rates amongst pain sufferers are two to three times higher than the general population.
Similarly, anxiety and depression levels are often an issue for chronic pain sufferers.
“When a person breaks an arm there’s an obvious condition to fix,” says House Call Doctor clinical director, Dr Ryan Harvey.
“It elicits sympathy and has a fairly definitive end point for the pain. Chronic unseen or silent pain may have no end in sight and there are no visible clues that the person needs help. This contributes to why those who suffer this type of pain can find it extremely difficult to manage.”
Dr Harvey notes that sufferers may experience scepticism or judgement from others who suspect their pain is being ‘put on’ or being exaggerated for personal gain.
“Chronic pain can significantly reduce the quality of a person’s life,” explains Dr Harvey. “Mobility and general function can be reduced, and social life and family relationships can also suffer.”
Here, three women share their stories with MiNDFOOD about living with chronic and invisible pain.
Rowena Gunton, 44, lives in Greystanes, NSW, with her husband and two children. She has Crohn’s disease, which is an inflammatory bowel disease.
“I was diagnosed with Crohn’s in 2003 after years of suffering, multiple hospitalisations and an initial diagnosis of ulcerative colitis.
During an attack I’d suffer extreme pain, bloating, lethargy and diarrhoea with blood. I became house-bound, toilet-bound and would lose between 10 and 12 kilos. There were times I wished I was dead.
I had fistulas (holes between my vagina and anus) that were causing infections, and painful pouches of pus at the end of my tailbone that needed to be drained surgically. Steroids in hospital were the only fix. I had to have several sets of clothes in my car because I had no control over what was coming and when. In 2014 I had a huge flare-up. My bowel was majorly inflamed and needed a rest. I had an ileostomy bag fitted to remove the contents of my bowel. The surgeon reassured me it was only temporary.
I remember being so upset. I’d fought it for so long. I didn’t want a bag. How could I live with that? I didn’t want people to know.
I threw out any clothing that made it evident and no longer wore bikinis. I experienced self-loathing, and it changed me a lot. I don’t feel as attractive and I now dislike my husband touching me, even though he’s comfortable with it.
At times my bag bursts at night. I’ve woken up covered in faeces and had to wake my hubby to change the sheets. That’s humiliating.
I realise that my quality of life has improved since the surgery. I’ve been hospitalised with things related to the disease, but not with the bowel.
I’ve been on an injectable drug for two years which has greatly improved my health and I’m currently talking to
“I SMILE BECAUSE I HAVE TO. PEOPLE DON’T WANT TO CONSTANTLY HEAR I’M UNWELL.” NATALINA, 46
my gastroenterologist about reversal of the bag. I’ll have a colonoscopy, and if there’s no inflammation, I can make a call either way.
I’m in two minds. If I do go for the reversal, am I doing it for the right reasons?
I’d love to remove the bag, but if my bowel doesn’t work when it’s put back together, I could be very sick. It may mean more surgery, more scar tissue and potential blockages. The drugs may not work without the bag.
I’m not sure if I’m ready to roll the dice just yet.”
Natalina Beckett, 46, lives in Narellan, NSW, with her husband. She has fibromyalgia, which causes widespread musculoskeletal pain.
“I’ve suffered ill health for the last 11 years and been hospitalised multiple times. I’ve experienced extreme fatigue, muscle-burning pain, numbness and bouts of pancreatitis which have put me in intensive care.
For a long time, I downplayed my pain. I just didn’t want to be a burden. I was getting sicker but I started to think perhaps it was psychological. I was working fulltime and just kept pushing through until my body gave in. I’d end up in hospital and sick for a month.
Initially the doctors thought I had an underactive thyroid and also tested me for MS, which came back negative.
In March I was hospitalised with another really bad pancreatitis attack. My heart rate had dropped, and I had numbness again.
The doctors diagnosed me with fibromyalgia. They said there’s no other auto-immune disease that could be the cause.
I recognise when my body is starting to decline. I get extreme fatigue and intense muscle burn like you get post-exercise. My left side goes numb and leaves me almost paralysed for a few days.
Some days I can’t even get dressed or hang out the washing. I can’t go shopping alone or drive more than 20 minutes. If I overdo it or get stressed, I can be bedridden for two days. I wake up feeling exhausted and can sleep all day.
I recently went bra shopping with my husband. I couldn’t get one of the bras off, so he had to come and help. I couldn’t breathe as I was in so much pain. We had to sit in a café after so I could rest. The whole left side of my face drooped because of numbness.
After 25 years working full-time, I finally accepted it wasn’t sustainable. I retrained as a beauty therapist and now work from home.
Financially this has impacted our quality of life. Living mostly off one income means we can’t afford the luxuries we used to.
My hubby is very supportive and I’m so thankful. My family tries to understand. My mother-in-law has issues believing in my illness, which is devastating. If she could think like that, then it’s likely others do, too.
Doctors are currently looking to try a medication that will help me. It’s likely to be an antidepressant that is commonly used for fibromyalgia.
For now, I smile because I have to. People don’t want to constantly hear I’m unwell. Everyone has their own issues. If I expressed the actual pain I was in every day, people wouldn’t believe it anyway.”
Shellie Mickie, 29, lives in Wellington, New Zealand, with her two children and husband. She has rheumatoid arthritis, a disease where the body’s immune system attacks its own tissue, including joints, causing painful swelling.
“In 2017 I had ongoing flu-like symptoms and my foot became painful and swollen. Two months later it was still the same. My GP thought it was lupus, but X-rays and ultrasounds showed rheumatoid arthritis in my foot.
I was pregnant and decided against medication as there was no guarantee it wouldn’t affect my baby. The pain was horrendous. I suffered cellulitis (a painful, bacterial skin infection) five times because my immune system was compromised, and I used crutches briefly because walking was agony.
The first medications I tried put me off. I was tired, zombie-like and my speech was garbled for a month like I’d had a mini stroke. I caught chest infections, colds and tummy bugs. It took me a while to try again. Every day I wake up and think, ‘Is today going to be a good day or an “ow” day?’ If it’s an ‘ow’ day, I think, ‘How I can mitigate some of that?’
I organise things the night before so in the morning, I can mentally prepare myself if I’m feeling sore. I always walk to the bus with the kids for school and, on bad days, rest later in the day.
If I promise to do something with my kids, I’ll do it, even if at 10pm I’m paying the price of mentally overriding the day’s pain.
I have to be honest with myself about pain levels. A two or four out of 10 is okay, a six is harder but an eight means I need to manage my pain to function.
I get anxious about the day ahead. Logically, I know I’ll be okay, but inflammation means my fight-orflight reflexes are always on.
Brain fog can also make concentrating and remembering hard. I have to use a calendar and put extra effort into everything I do.
People struggle to understand my pain, especially because arthritis is considered an ‘old person’s disease’. People aren’t educated on its effects, and consider it like a grazed knee that will come right.
People in pain can be perceived as lazy or depressed, rather than struggling with a painful, lifelong condition. More awareness and education about chronic pain and disease is needed.
Long term, a cure would be amazing. In the meantime, I’ve started a new medication, though it’s too early to see improvement.
For now, I have to make the best of things. I never want my disease to be an excuse for not taking my son to school or doing family things.
No matter how uncomfortable I feel, my kids and husband deserve the best version of me.”