Advocating for yourself at healthcare appointments

Engaging with the healthcare system can be fraught with difficulties at the best of times, but especially if you are someone living with a chronic condition. This is not just due to the strain on our system, but also the result of a general lack of awareness when it comes to recognising the signs and symptoms of the many forms of arthritis. This can lead to delays in diagnosis, leaving some feeling dismissed or misunderstood, which is not only frustrating, but also deeply upsetting. The fact that the condition is a ‘hidden illness’, one that is not typically seen from the outside, makes things even more challenging. However, this does not have to be your experience going forwards. Things can and do change when you learn to speak up for yourself.  

Is anyone listening? 

Regardless of the circumstances, feeling that your health concerns are being dismissed is simply not acceptable. Chronic pain or ongoing symptoms should never be ignored or dismissed. Some people dealing with chronic pain say they have felt stigmatised or made to believe that their pain is ‘all in the head’ – just take a read of our interview with Emma O'Carroll, who was diagnosed with axial spondyloarthritis (or axSpA) to read her experience of this and her fight to be heard. Regrettably, studies indicate that certain groups within society often experience a sense of neglect during medical consultations – these include black people, people with a disability, people who identify as LGBTQIA+ and women. Fortunately, this trend is increasingly being challenged, yet there remains significant progress to be made. As within any field, some professionals do not meet the expected standard of interpersonal skills, especially when interacting with people facing physical and mental challenges relating to their condition. That’s when advocating for yourself comes into play as it improves your chances of being understood and having your needs met.  

But what does ‘advocating for yourself’ actually mean? 

Indeed, healthcare professionals are often under significant stress and have many responsibilities, yet it remains essential that you are listened to and understood. Self-advocacy is about endorsing your own welfare and placing your needs at the forefront of your care. It involves careful planning, thought and practice so that, in future healthcare appointments, asserting yourself and your needs is likely to start coming more naturally to you. Part of self-advocacy may include seeking additional medical evaluations, requesting referral to a consultant or for additional screening tests, such as an MRI or blood tests. It may also entail voicing your dissatisfaction with the treatment you are receiving, urging the healthcare professional to engage more attentively with you or, if necessary, opting to change to a more compatible healthcare provider (and ensuring that your medical records are transferred to your new doctor). Remember that you are the person who knows what it’s like to live with chronic pain, discomfort, low mood, poor sleep or any of the other many symptoms that you can experience when living with arthritis, so it’s not always a case of ‘doctor knows best’.  

How to be more assertive 

Being assertive might not come easily to everyone, but it’s crucial to adopt this approach at your appointments (or, if you struggle a lot with this, bring someone along with you who can be assertive on your behalf). Some people fear that their questions may come across as basic or ignorant, but try to take the stance that, ‘There’s no such thing as a stupid question’. It’s important to see your doctors as human. The ideal relationship with your health professional is one that is mutually respectful, empathetic and non-judgemental. This concept can be unfamiliar for those who have tended to put healthcare professionals on a pedestal, but the truth is that many are happy for you to ask questions and actually prefer you to be involved in the decision-making process around your care. Although highly knowledgeable with, no doubt, valuable expertise to contribute to your treatment plan, health professionals should still be viewed as partners (rather than dictators!) in the care of your arthritis. Thankfully, the new approach to patient care is that the patient is put at the centre of their own treatment plan. It is about shared decision-making around potential treatments and actively working alongside your healthcare professional. This means asking questions about the reasons they are choosing a particular treatment, and what that means for you. It is also about having someone who validates your experience, takes your healthcare concerns seriously and supports you to make the best decision about treatment that will suit you and your lifestyle. If you find assertiveness doesn’t come naturally to you, have a read of this useful article on the subject from the Mayo Clinic. 

Asking questions with confidence 

It’s very normal to feel overwhelmed soon after receiving a diagnosis of arthritis, but that’s where we can help. Firstly, we urge you to think about and, ideally, write down a list of questions you want to ask at your healthcare appointment. It can be challenging to get everything covered in time-pressed appointments, but by being organised prior to the appointment, you should be able to get most of your questions answered. Some questions that you might consider include those based around diagnostic tests, treatment and self-management regarding your condition. Follow these no-nonsense tips to get the most out of your upcoming appointments; 

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