We Need to Stop Shaming Others for Their Treatment Choices


As someone living with reflex sympathetic dystrophy (RSD), also knowns as complex regional pain syndrome (CRPS), being part of a supportive network of people who struggle with the same diagnosis has been a critical component of how I manage living with this disease.

Online support groups, in-person meet-ups, group chats and message boards are some of the most common ways we connect with others around the world to learn what treatment options are available to us.

While generally these mediums are supportive, safe spaces, I’ve noticed a trend over the last few years that has become increasingly bothersome to me and many others: treatment shaming.

 

RSD/CRPS is considered a rare disease, which translates into limited funding for research and treatment, minimal to no education for the medical community and a general lack of awareness. Because of this, the rate at which new treatments are being looked at and made available is moving at less than a snail’s pace.

Understandably, whenever a new treatment actually does becomes available, a lot of buzz and hope is created.

Over the last 13 years since my diagnosis, I’ve seen many treatment options briefly rise in popularity, stirring up much excitement in the community, often elevated to the status of latest fad. And, like most of them, their moment in the spotlight fades, and we are simply left with yet another mediocre option.

With any treatment there are usually success stories, and oftentimes those eager to share their positive experience align with doctors and other people in the community who adopt a singular point of view on how the disease should be treated and managed based on their personal experience.

Some then take this a step further and attempt to persuade others that their treatment regimen or doctor is not properly managing them because they have chosen a different path. Bullying tactics and fear often accompany this, causing some community members not to feel safe sharing their experiences with treatment. This is the definition of treatment shaming.

All of this has led to hurt feelings, misinformation and exclusionary behavior towards those who chose other treatment routes and creates division among the community.

This issue is not limited to the RSD/CRPS community. In fact, many rare disease communities also facing the same hurdles for proper research and treatment for their specific disease also experience this.

It is never OK to shame or judge someone based on their chosen treatment path.

As people with a chronic illness, we already face so much criticism and misunderstanding from others who don’t understand our experience. It’s very difficult when that begins to occur within our network of support. Shaming or hurling an unsolicited opinions towards others based on their treatment choices can be hurtful, discouraging and even dangerous.

Treating RSD/CRPS is a journey – one that is both personal and unique to each individual. There is no right or wrong way to manage this very difficult disease.

We are all in this together. Let’s lift each other up, and hold space for our fellow warriors without shame or judgement.

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Thinkstock photo via ARTQU.

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