Stigmatized

I have the grand misfortune of having 3 of the most stigmatized diseases – type 1 diabetes, celiac disease, and borderline personality disorder – and I would like the public to stop making it worse.

Particularly this time of year, many make jokes about how if they eat a piece of pie they’ll get diabetes or how difficult it is to host a friend who can’t eat gluten.  The quips abound in everyday conversations, in tv shows and advertisements, and especially online.  It never ends.  Everywhere I turn, another person thinking they’re so funny with their one-liners and tweets and jests.  But these are real diseases.

Diabetes

No amount of pie or mashed potatoes or candy will cause type 1 diabetes.  Nor will it somehow make my diabetes worse. As long as I take enough insulin to cover the carbs (the same way your body produces insulin from the inside), I will be just as diabetic as I ever was.  And while obesity is linked to type 2 diabetes, no one carb-loaded meal is the reason someone develops that disease.  There are several factors that influence type 2 – it is in fact highly genetic.

I have type 1 diabetes.  It is not associated with anything I eat or don’t eat.  But the constant focus on weight and eating habits with diabetes has a huge influence in maintaining my eating disorders including diabulimia (wherein I will skip shots to lose weight).

The stigma around diabetes is so bad I stopped referring to myself as having diabetes and tell people that I have an autoimmune disease that affects my pancreas.  Because that is what type 1 is all about.

So please stop making fun of diabetes.

Celiac

As for celiac, if you asked me which of my illnesses I’d cure first, it would be this autoimmune disease that affects my small intestine.  I am fed up with the people who chose to be gluten-free thinking it would make them healthier (spoiler alert: it doesn’t make you healthier) because they have made it seem to too many that my inability to eat gluten is a choice.

Believe me, I would love to eat gluten.  I would love not to be singled out at every public event and have to scrutinize every meal prepared outside my home to make sure it won’t in fact land me in the ER.  I don’t want to ask people to make things separately or to get the looks of pity when someone is eating a piece of bread in front of me.  I don’t want to be the “difficult” one.

So please stop making fun of those of us who have to eat gluten free.

Mental Health, Specifically: Borderline Personality Disorder

Quite possibly the worst stigma I face is that regarding mental health.  Not just mental health, but the diagnosis of borderline personality disorder specifically.

We know the stigma around mental health – thus the campaigns like #ImNotAshamed and #SickNotWeak.  But BPD takes on a stigma exponentially more damaging – not only in the public but among mental health professionals themselves.  In fact:

The overwhelming majority of studies indicate mental health clinicians have  negative perceptions of and emotional responses towards patients with BPD.[1],[2]

And another study found statements from providers finding patients with BPD as difficult and undesirable” [3] including:

  • “In professional circles, borderline is often synonymous with ‘pain in the ass.’”
  • “well, they’re probably like the least popular patients to work with. Most people don’t like working with them. It’s too much work.”
  • “I know it’s going to be difficult to interact with them… they’ll probably get on my nerves”
  • “they’re very taxing”
  • “not a lot of rewards come from beating your head against the walk with someone.”

More typically in my experience: Clinicians use pejorative terms such as “not sick,” “manipulative,” “hateful,” and “angry, noncompliant” to describe those of us with BPD. [4]

But they are not alone.  Manipulative is a word I hear over and over – in the media, from those  related to me or those who claim to be friends, and from others who know someone with BPD.  It is particularly used in times of crisis and when one faces a suicide attempt (of which I am recovering from 2 from exactly a year ago and many over the course of my lifetime). To all of those who think that those with borderline are manipulative, I leave you this from the world’s leading expert on the subject, Marsha Linehan:

It is rare, however, that a person with borderline personality disorder is actually trying to “manipulate,” that is, to manage, control or influence in a subtle, devious, or underhand manner (Oxford dictionary); or to handle with mental or intellectual skill (also from the Oxford dictionary). A suicide threat or attempt is certainly not subtle or devious. It is right out in the open!

I think it is safe to say that folks with borderline disorder are usually not skillful in their interpersonal communication styles. The problem is that they often can only express their emotional pain by screaming out how much they want to be dead, which is likely true. Self-harm, alas, regulates emotions for many.

So please stop belittling and judging those of us who struggle with mental illness and in particular with borderline personality disorder.

These three diseases isolate me more than any of the others I deal with on a daily basis – not just because of the actual effects of the diseases but because of how people act around them, the stigma they impose.  This is my life.  I chose none of it and I would find cures for them all if I could.  I do not like living this way and I do not like how it impacts others around me.  I don’t need you to make it worse with your jokes and misunderstanding and judgment.

So please stop stigmatizing my life.

________________________________

[1] Fraser & Gallup (1993). Nurses’ confirming/disconfirming responses to patients diagnosed with borderline personality disorder. Archives of Psychiatric Nursing, 7, 336-341.

[2] Sansone, R. (2013). Responses of Mental Health Clinicians to Patients with Borderline Personality Disorder. Innovation in Clinical Neuroscience. Vol 10.

[3] Sulzer, S. H. (2015). Does “difficult patient” status contribute to de facto demedicalization? The case of borderline personality disorder. Social Science and Medicine, 142.

[4] Hersh, R. (2008) Confronting myths and stereotypes about borderline personality disorder. Social Work in Mental Health. Citing Nehls, 1998.

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