Something chronic:
What folks wish you knew about their chronic illness
KERA HAS FIBROMYALGIA
You can’t fix it all with yoga and good nutrition! I know there are huge benefits, but the reality for people with fibromyalgia is that there are a lot more challenges than for abled folks. Sometimes going to a yoga class might mean I can't get out of bed for the rest of the week; standing up to cook can cause a flare-up. People need to trust us when we communicate our limits, rather than piping up with unsolicited advice. If a disabled or chronically ill person wants advice, they'll ask for it.
AYAN HAS CROHN’S DISEASE
It’s frustrating when people say, “I wish I had Crohn’s so I could lose weight as fast as you do.” When I have a flare-up, I just can’t keep anything down. There’s a lot of stress about bathrooms and needing to know where the nearest ones are, plus fatigue and exhaustion like no other, and anxiety around food and whether or not it’ll make me sick. The unpredictability of it all is really difficult – not knowing whether I’ll get sick or end up in hospital sometimes means not being able to plan very far ahead.
BRIDGET HAS ENDOMETRIOSIS
Endometriosis is hard on your body, but it’s just as debilitating for your mental health. I spent six years bouncing between medical professionals before my pain and symptoms were finally taken seriously. With the average diagnosis time between seven and 12 years, it’s so easy to feel like nobody cares, and for others to make you feel like it’s all in your head. It can also take quite a toll on your financial state. Private health insurance, pelvic therapy sessions, acupuncture, gynaecologist and ultrasound appointments, medications… I don’t want to think how much I’ve spent on endometriosis alone this year!
STEPHANIE HAS MYALGIC ENCEPHALOMYELITIS/ CHRONIC FATIGUE SYNDROME
Being physically unwell and feeling happy aren’t mutually exclusive. Being positive and having a good time isn’t contradicting my illness. Genuinely smiling through pain has become a skill of mine. It’s always nice when people ask how I am before asking about my illness. It’s usually more fun, too! Having said that, empathy and listening are great, and being understanding is usually more helpful than actually saying, “I understand.”
KATHARINE HAS MULTIPLE SCLEROSIS AND AUTOIMMUNE HEPATITIS
Chronic immune diseases aren’t consistent or predictable. Not only is there a huge variation in how diseases like MS affect different people, the symptoms can also change from week to week and year to year. When I was first diagnosed, I spent a few months only able to walk with a stick – just because I’ve recovered enough to walk unaided now doesn’t mean the disease is ‘better’.
ASHER HAS HYPERMOBILE EHLERS-DANLOS SYNDROME AND RELATED ILLNESSES
Outpatient waiting lists for specialist services in the public health system are massively long. Public rheumatology services at a large hospital in Melbourne have a two-year wait for an initial appointment. Physiotherapy is only partially funded on the Medicare Benefits Schedule for five sessions a year, but people with EDS need a session a week on average. We’re condemning people who live with chronic health conditions to go without diagnosis and adequate management – or go broke paying for management of their condition.
ALANA HAS PRIMARY SCLEROSING CHOLANGITIS AND ULCERATIVE COLITIS
I work full-time, I go out with friends, I enjoy a drink from time to time and I try not to focus on my health issues in my day-to-day life (I take my meds, I do my bloods, I get on with it). Because I come across as so healthy to most people, they don’t know anything is wrong. This is the case with so many sufferers of chronic illnesses – we all deserve Academy Awards because we’re really good at pretending there’s nothing wrong. When I do need time off or I’m having a bad health day, people think I’m being dramatic or making things up.
EMILY HAS CYSTIC FIBROSIS
What could people do to make my life easier? Stay home if you’re unwell and get the flu vaccine! A basic cold may seem like nothing to you, but it can really knock me around and take me months to get rid of. That said, I’m often underestimated, especially by doctors. I recently pushed a 4.2kg baby out of my vagina without any interventions or pain relief, and none of my medical team expected me to be able to because of my limited lung function. I showed them! Everyone with CF is unique, and doctors should understand that most of all.
JASMINE HAS POLYCYSTIC OVARY SYNDROME
Workplaces need to be more understanding of chronic illnesses relating to women’s pain. There seems to be a rhetoric that if you’re having a painful period, you should just take some pain killers and get on with it, otherwise you’re being a bit of a ‘hysterical’ woman. But when you can barely walk from the pain and are prescribed strong medicine to help, a little more empathy is really appreciated. Having a flare-up affects my whole body: I have painful periods, my energy levels fluctuate with my blood sugar, I get cystic acne that affects my confidence, and my mental health suffers.
SANDRA HAS RHEUMATOID ARTHRITIS
There’s not a wide understanding that rheumatoid arthritis is an autoimmune disease, and there are side effects that come with it. People tend to think it’s just stiff joints and something only ‘old’ people get. Some of the unexpectedly difficult things I deal with include doing up buttons and opening jar lids. It’s the simple things you expect to be able to just do, and when you can’t, it can be really frustrating.
MICHELLE HAS ENDOMETRIOSIS
Whenever I feel a pain, I don’t know if it’s my endometriosis or ‘something to worry about’ – a more sinister thing. I had an ovarian cyst burst once because I ignored it and thought it was endo. That was pretty rubbish. You’re never quite sure what’s going on with your body, because your baseline isn’t zero pain. Sex is always a gamble for me, too. I don't know if it will feel good or hurt. It opens up a lot of communication with my partner, but I really wish it would just chill the fuck out and let me have a good time.