Patient - Provider Experience: FND Stigma in the Healthcare System w/ Dr. Velazquez and Teja Zeribi

Teja Zeribi:

Stigma against FND patients, or other functional disorder patients, is a pervasive issue across healthcare systems, regions, subspecialties, and that bleeds into and is influenced by societal perception of those with the condition.....

Watch FULL video interview here.

It deeply impacts the quality of care patients get, patient willingness to seek care, provider patient relationships, and a patient’s sense of self and understanding of their own condition. 

I have many stories of stigma and bias against me as a functional patient, and have also witnessed it in the role of someone helping provide inpatient medical care. The duality of this experience -of the pain and trauma inflicted on me by stigma and biased professionals, and witnessing professionals who participate in this behavior who I know to be good providers and truly care about patients, but simply misguided and biased by systemic and cultural factors, not there own personal malice, complicates my understanding of stigma in the healthcare field. 

It is a conversation that I approached with trepidation -although the issue is there, and there are of course certain solutions with clear implementation pathways (for example increase education about functional disorders early in the education process of all related healthcare fields), I do feel a certain amount of hopelessness due to how pervasive the issue is -across both society and the healthcare system- how do you address something that is fundamentally ingrained in the beliefs of someone by systemic factors that may be difficult to identify? 

But this perspective, I realized as we spoke, was too “easy” for both the patients and healthcare professionals caught in these systemic issues. It enables a lack of accountability for both parties -on the patient to not use their experiences to advocate for themselves and other functional patients, and on providers to not change themselves, or make an effort to change the perspectives of colleagues and systems within the healthcare they provide. It is a product of the problem itself. Dr. V and I had a conversation about the “ladder” or “triangle” about the process of healing. It articulates really well something I have witnessed in the last four years -true healing is using your experiences to help others heal, which is so relevant to the conversation about stigma and bias for both providers and patients. 

I am reminded that four years ago, my experience as a functional seizure patient was vastly different than it is today. Do I still experience discrimination, stigma, misinformation, and bias? Yes, of course -but not nearly to the extent that I did. Even four years ago, there were providers who didn’t conform to the biased and widespread beliefs around FND within their healthcare system and actively helped me despite the cultural expectations and beliefs of other providers. It is important that in these conversations those providers are highlighted equally to, or perhaps even more than, biased providers -after all, why make an example of what not to do, but rather what to do? 

I think the same applies to me, as a patient and a future healthcare provider -use my experiences to help others, recognize that bias is systemic and held by everyone -but that doesn’t negate accountability and change in individuals, and to not hide by a false idea of hopelessness, but chose to believe that through individual’s experiences and actions -especially those impacted by systemic problems -systems can be gradually changed. 

Watch FULL video interview here

Connect with Teja: [email protected]

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 Disclaimer: Dr. Velazquez has not had the chance to review the above article for scientific accuracy, nor she is endorsing any type of opinion, comment, suggestion, product or treatment possibly mentioned. You are the sole responsible for the interpretation of the data shared by our Patient Collaborators or Personal Experts. Whenever in doubt you can contact directly the person who wrote this Blog Post article and/or you can report it to Science & Shamanism, LLC, Dr. Velazquez and/or her designees. We will always try to help! Within the limitations of our human existence and capabilities, considering scarce time and high workload.