We Are All Experts

Everyone is the expert on their own life.

I first heard this phrase in social work school in 2013, as a lens for viewing and working with clients. It has remained with me since then, and I’ve found it to be applicable in many areas outside of social work – in teaching yoga, in being a Spondyloarthritis patient, and in the New York City SAA Support Group that I’ve been leading since 2017.  In the group guidelines that I share at the beginning of our meetings, this concept figures prominently: “Remember that everyone’s experience is different, and what worked for you might not work for someone else. As we say in social work, everyone is an expert on their own life!” This means being careful about giving advice, and recognizing that we can never understand another person’s struggles – and what has or has not worked for them – better than they can. (In fact, I believe the world would be a better place if we all used this lens with everyone we interact with.)

In addition to viewing others as experts on their own lives, I think it’s also essential that we as SpA patients view ourselves as experts on our own lives. This philosophy has helped me to advocate for myself with doctors and in other situations when my pain or my needs are not being heard or understood. Unfortunately, such experiences with doctors are not uncommon for people with SpA (and other chronic conditions), and especially for women. Research has long shown gender disparities in how patients’ self-reported pain is addressed by doctors, with women’s pain being more likely to be dismissed or not taken seriously. Such disparities also extend to diagnosis: just a few weeks ago, I met a woman whose doctor told her that women cannot develop Ankylosing Spondylitis – an outdated misconception that has been scientifically disproven. Combating these gender disparities will take time, education, and the continued dismantling of systemic sexism and deeply rooted unconscious attitudes – no small task. But perhaps if more people – both medical providers and patients themselves – can come to view patients as experts on their own lives, more patients’ voices will be heard and their pain properly treated, and they might even be diagnosed more quickly.

As people with Spondyloarthritis, we deal with pain, fatigue, loss of abilities, and a great deal of uncertainty. This uncertainty can be related to unclear or delayed diagnoses, difficulty finding effective medication, and unknowns about the future — which might sometimes lead us to feel that we are anything but experts. Yet we can still be experts on what makes our pain better or worse, which doctors help us to feel heard and supported, and which activities bring us joy and make us feel healthy. This is a way for us all — women, and people of all genders — to be empowered. As Women’s History Month comes to a close, I invite everyone – SpA patients, their loved ones, and medical providers – to remember that we are all in fact experts on our own lives; and that this is no less true for women – even when we have been conditioned to doubt ourselves, and have historically been doubted by others.

Sandra Voss is a social worker and yoga teacher in New York City. She has had Spondyloarthritis since 2014, and has been leading the SAA’s NYC Support Group since 2017. She teaches online yoga classes tailored for people with SpA/AS – learn more at https://spondystrong.wordpress.com.