In many ways, the Internet has been a godsend for those who suffer from obsessive-compulsive disorder or other brain disorders. People who previously might have felt so alone are now able to connect with others who often easily relate to their struggles. Parents and loved ones can also share their experiences, including their highs and lows, successful and unsuccessful treatment paths, and all kinds of anecdotes. I’ve learned a lot from reading about others’ trials and tribulations.
A couple of months ago a blogger who I consider reputable wrote about her brain disorder and the stigma she has encountered. A common topic, right? Well, usually. What surprised me is that the stigma she experienced came from a health care provider. Once the physician who was caring for her (not her regular doctor) saw the medications listed on her records, he decided that her physical complaints were “all in her head.”
Was this an isolated incident? It doesn’t appear so. Since reading that post, I’ve come across similar accounts on other blogs, and have even received an email from someone whose visit to the emergency room (for a physical illness) ended with the realization that those with known mental health issues were assigned a different color hospital gown to distinguish them from “normal” patients. When I delved further, I found other people who have had similar experiences.
So how should this type of discrimination be addressed? By switching health care providers? Or maybe by filing complaints (which just might confirm the protester’s “craziness”) against the ones who are treating us this way? From what I understand, a good number of people resort to not reporting all their medications, or lying about them when asked, due to fear of stigma. And then there are those who will not even seek help even when they desperately need it because they fear being stigmatized. Needless to say, this is a major cause for concern.
This realization has been a true eye-opener for me. In my own experience visiting health care providers with my son Dan, who has obsessive-compulsive disorder, I never witnessed blatant discrimination. Of course, nobody knows what anyone else is really thinking, but I never felt that any comments made, or actions taken, were questionable. Sure, I have my share of complaints about how Dan was treated, but they are mostly related to what I feel was mistreatment of his OCD specifically, and not due to the stigma of brain disorders.
Obviously this information is disturbing on so many levels. I hate that those who need help might not seek it, or might not be treated well. And how unfortunate it is that there are so many dedicated and caring professionals out there who now might not be trusted, or even approached, by people who have had bad experiences, or at the very least, preconceived notions.
Perhaps what’s most upsetting to me is that I’ve always thought that fighting stigma began with education and awareness. I thought if we dispelled the myths of brain disorders and truly educated people, understanding and compassion would follow. But health care professionals are supposedly already educated, already aware, and already compassionate. So what do we do now? I don’t know exactly, but certainly we need to continue to advocate for those with OCD and other brain disorders. Clearly, there is still lots of work to do.
Doctor and patient photo available from Shutterstock