Artist and writer Amelia Saward has several conditions that, had she relied on many professional opinions, never would have been properly treated. Here, she encourages other people - particularly women - to seek out the treatment they deserve.
Despite years of ongoing symptoms, in 2020, a new bout of illness saw me become sicker than I’d ever been. But when trying to work out why I was so breathless, had recurrent chest pain and frequent flu-like symptoms, I was told by several medical professionals that I wouldn’t find answers and should stop looking. Sometimes, they’d suggest exercise and counselling as the solution. At the time, I wasn’t able to shower without laying down for hours afterwards and couldn’t even do minimal activity without being in bed for days. Rest was the only thing that helped, yet it wasn’t usually recommended.
As a young woman it can be challenging to get adequate medical care. It’s not uncommon to be dismissed as anxious or overreacting. While I’m lucky to have doctors who genuinely care and actively listen, I’ve also had many experiences where this wasn’t the case.
Yes, suggestions of exercise and counselling can sometimes be helpful and most doctors were probably trying to be helpful. However, as someone who has dealt with chronic symptoms since my teens, I knew this plan wasn’t going to improve my health. Exercise usually makes me feel worse, which is hardly surprising given that exercise intolerance, or specifically post-exertional malaise (PEM), is a hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
ME/CFS is a complex, multi-system condition that is often post-viral - and it’s something I was diagnosed with at seventeen. This condition has gained some awareness recently because of its similarity to Long Covid, but it’s still widely misunderstood and dismissed. I don’t think the fact that 75-80 percent of patients with ME/CFS are women is a coincidence.
The refusal to look beyond narrow medical textbooks - and actually listen to patients - needs to stop.
It’s disappointing to see some Long Covid clinics in Australia promoting exercise and cognitive behaviour style programs, similar to what was historically recommended for ME/CFS. Now known to be ineffective and even harmful, guidelines recommending this approach were recently changed in the UK and US, but remain in Australia.
With a suggested 5-10 percent of Covid cases in Australia experiencing ongoing symptoms - and women more frequently affected - there’s an influx of people with post-viral conditions that may not get adequate care.
It’s important people know it’s okay to question health professionals if something doesn’t feel right. Listening to your body is so important in dealing with post-viral illnesses and only you truly know when you need to rest and when it’s okay to push a little.
Fortunately, I listened to my instincts and didn’t stop searching for answers and solutions. It’s an ongoing process, but I found others online with similar conditions, who led me to specialists who diagnosed me with postural orthostatic tachycardia syndrome (POTS), a condition common in people with ME/CFS and Long Covid. These specialists offered treatment which has given me a quality of life back.
It's true that there are health questions I won’t get answers to, but if I had trusted those advising me to give up on finding information, I’d be far worse off. Especially as women, it’s important we know our symptoms are real and valid - and trust ourselves when navigating the tricky world of diagnosis and treatment.
Amelia Saward
Amelia is a Naarm/Melbourne based writer, artist and arts worker living with chronic illness.