I wish I had known…

6 minute read

Rheumatology patients reflect on what could have helped earlier on in their health journey.

As people with rheumatic diseases, we know the challenges and complexities that come with managing our conditions.

From the frustrating search for a diagnosis to the ongoing struggle to find the right medication and support, our journey is not easy.

We’ve learned the importance of lifestyle changes, how to navigate the health system and how to slow down and listen to our body’s needs. Yet, there are still things that we wish our doctors had told us along the way.

We asked members of the CreakyJoints Australia social media community what they wished they’d known earlier about their condition, symptoms, treatments and more. We received many replies from people keen to contribute their insights and are proud to share them with The Medical Republic readers.

I wish I had known my diagnosis earlier

Delays to diagnosis are a common issue in rheumatology, with some people waiting years before being diagnosed. We know there are many reasons for this, including patients ignoring early symptoms, having limited access to care or having symptoms that don’t match common diagnoses.

Too often, patients (especially women) have their symptoms or concerns dismissed as stress or being “all in their head.” Experiencing debilitating symptoms and not knowing what causes them is distressing and exhausting. It can also reduce our trust in the medical system.

“I’ve had ankylosing spondylitis symptoms since I was a teenager in the 1970s, but I wasn’t diagnosed as they didn’t expect this condition in a young female. I remained untreated for 15 years until I saw a female general practitioner (GP) who believed me. That meant I could finally be treated appropriately.” — Annie M

We need our GPs to recognise rheumatic symptoms quickly, so we get the benefits of early intervention. Above all, we need to be believed and listened to.

I wish I had known what to expect along my journey

Being diagnosed with a chronic condition is often confronting and scary. We know you all do a good job of delivering this news compassionately. We also understand that receiving information all at once can be overwhelming. Most of us want you to be upfront about the roller coaster journey we’ll be on and help us manage our expectations. However, we also need you to help us be optimistic about our treatment pathways.

“I loved that my rheumatologist had undying faith on my behalf that ‘I’m sure this is going to work for you and get it under control’ even though at each step the drugs never worked. The mind trick was what kept me sane.”Rebecca J

“I wish I’d known that brain fog and fatigue would be worse than anything I’ve ever experienced before.”Anonymous

Newly diagnosed people need to know that we can continue leading happy and healthy lives even though we’ll likely have to do things differently.

“When I developed an additional type of arthritis, my symptoms were getting worse. I assumed it was a one-way process. It was distressing. I wish I’d known that careful management could reduce the severity and make it easier to live with.”Penelope M

I wish I had received more holistic advice about managing my condition

Please suggest non-medicinal activities we can do that help us to manage our conditions and lives as well as possible (such as modifying our diet).

“Sugar is a significant cause of inflammation. I started having symptoms when I was in my late 20s. Knowing more about this could have eased my pain and helped me manage my symptoms much sooner.”Jai M

“Working with an anti-inflammatory diet COULD be worth trying and could make a big difference — any improvement is better than none.”Anonymous

“When I was diagnosed, I wanted to learn all I could and to have known about resources to help. Rheumatologists should give us all the tools we need to tackle what we live with so we are well-versed about our conditions from the start.”Judith F

It’s also important for us to know the benefits of multidisciplinary care and how to access it. It’s not enough to prescribe medications for us and then leave us to work out the rest for ourselves. We need a holistic healthcare team around us, including physiotherapists, mental health professionals, dietitians and podiatrists.

One suggestion is to have a list of services in your area handy to give to all new patients. This could include allied and community health services, support groups and peak health organisations.

Many people aren’t aware of the financial supports available until they hear about them from other patients. Our CreakyJoints Australia website has a page on Government pensions, benefits, and services for people with chronic conditions. This comprehensive list is downloadable as a PDF so you can share this with your patients as well.

I wish I had received more information on medications, side effects and co-occurring conditions

This was the most popular topic raised in the comments we received.

“If you’re starting methotrexate and are of child-bearing age and/or wish to consider starting a family, consider the side effects and safety of this drug.”Amy T

Several people made conflicting comments on the information they received about stopping methotrexate or biologics before surgery. Some were unsure about when or how to access shingles vaccines. We believe this highlights a need for doctors to ensure the information they share about such topics is accurate and consistent.

Prednisolone was also a hot topic, with people calling for doctors to provide more information about possible long-term side effects (such as osteoporosis and Cushing’s syndrome) and tapering.

“I wish my rheumatologist told me which biologic is also likely to impact my Crohn’s disease.”Guy

“I’ve got an undiagnosed neurological condition that has become worse since I’ve been on my RA meds — no one tells you these things.” — Amy

We understand that you only have a few minutes to get through lots of issues when you see us, and that you must address our acute needs first. However, we hope that by sharing our perspectives, we can help you better understand our needs and concerns. Above all, we thank you for all the support you readily give us.

Rosemary Ainley wrote this article on behalf of the CreakyJoints Australia team.

CreakyJoints Australia would like to thank The Medical Republic for this opportunity to share the patient voice within the Australian rheumatology community.

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