‘Don’t Vilify Us’: Young Indians With BPD Reclaim Their Narrative

“Living with borderline personality disorder can be a lonely journey, but it helps to have a community.”

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Mind It
8 min read
<div class="paragraphs"><p>BPD Humans is a community and support group for people with borderline personality disorder.</p></div>
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(Trigger warning: Mention of self-harm, suicide. If you feel suicidal or know someone in distress, please reach out to them with kindness and call these numbers of local emergency services, helplines, and mental health NGOs)

"Back then I didn't know what was wrong, just that something was."

"I was the type of student that would attend every single class and always be on top of my coursework. But when I suddenly stopped doing any of it, my teachers took notice."

"One of the days I had a full blown 'episode', I remember sitting in my HOD's office and just bawling my eyes out, saying "I don't know what is wrong with me, ma'am."

A couple of months after this incident Maheema was hospitalised for hurting herself. This was also when she was diagnosed with Borderline Personality Disorder (BPD).

This diagnosis is what led Maheema to Milana, a senior in her college with the same diagnosis, and together they set out to create a safe ecosystem and community for people like them.

What is Borderline Personality Disorder?

Borderline Personality disorder is a serious mental illness that can often times go undiagnosed or unnoticed because of the way it can lurk under the surface.

“BPD is a personality disorder characterised by an instability in moods, behaviors and relationships.”
Dr Kamna Chibber, Head, Mental Health and Behavioral Sciences at Fortis Healthcare.

"There are specific criteria which need to be met for an individual to be diagnosed with the illness," Dr Chibber adds.

According to Mayo Clinic, some signs of borderline personality disorder include,

  • Inconstant Self-image

  • Volatile emotions and impulse control

  • Intense fear of abandonment

  • Pattern of unstable relationships

  • Suicidal threats or behaviour, or self-injury

Studies show, 8%-10% of Individual with borderline personality disorder end up dying by suicide, while self-mutilative acts (e.g., cutting or burning), are present in as high as 65-80% of the patients.

'Not Everyone Who Has Mood Swings or Insecurities Has BPD'

If you were to google Borderline personality Disorder, chances are, you would be convinced you have it. That is how vague and general the symptoms can sound.

After all, we all have mood swings, we've all been obsessed with someone or something, we've all felt insecure when we don't receive attention from the ones we love.

But the key to recognising BPD is to understand the scale of these reactions.

Maheema explains, "Say I have a favourite person—a concept in BPD which refers to someone the person is most attached to or looks up to for validation—I text them, they see my text but don't respond. Any other person may be bothered to some degree.

“But if that happens to me, or someone else with BPD the reactions can be extreme. It can lead to us calling the person back multiple time, hurting ourselves, lashing out, having full blown episodes of uncontrollable crying.”
Maheema Misra

"Its almost like a trauma response," she adds.

"A seemingly minor this as not getting a text back can completely undo us emotionally," adds Milana. "Its not just mood swings, we can go from being ecstatic to being abjectly depressed so fast, and that is something outsiders may not always understand or have the patience for."

“Its not that I don’t understand my reactions are irrational, but its hard to control yourself in the moment. Afterwards, I end up feeling extremely guilty, asking myself ‘why did I do that?’ over and over.”
Maheema Misra
<div class="paragraphs"><p>BPD is marked by a sharp or extreme oscillation in a person's state of mind.</p></div>

BPD is marked by a sharp or extreme oscillation in a person's state of mind.

(Photo: iStock)

The Pervasive Stigma

India has not always been kind to patients of mental health, either villianising or trivialising them.

“My parents were definitely uncomfortable with it when I was first diagnosed. They would tell people that I had depression.”
Maheema Misra

"My parents were clueless about mental illnesses before my diagnosis," says Minala, "they thought it was paagalpan, where you're completely looney. That's the impression they had."

According to a survey conducted by The Live Love Laugh Foundation in 2018, 62 percent of the survey participants used terms such as retard, crazy, mad and stupid, when asked to describe people with mental illness.

But both Maheema and Milana are optimistic. They both think things are changing and people are becoming more receptive and sensitive to mental health.

"But even people of my parents' generation are warming up to the idea now," says Milana.

Maheema agrees saying, "In the last few years, they've made an effort to educate themselves, they've sat down with me and tried to understand me."

But while Milana feels people are now more receptive to and comfortable talking about certain conditions like anxiety and depression, it isn't the case with BPD yet.

"Things like schizophrenia, Bipolar disorder and Borderline personality disorder are more esoteric for them to really understand. They know what they are but are scared of these diagnoses,” says Milana.

“It is relatively normal to talk about anxiety and depression these days, and through our group we hope the same could be achieved with borderline personality disorder.”
Milana Prakash

Borderline personality disorder is often confused with Bipolar Disorder, and although its more common than BP or Schizophrenia, it is one of the most misunderstood mental illnesses.

People with borderline personality disorder are thought to be volatile and violent, difficult, attention seeking and even manipulative.

"A huge misconception is that people with BPD can't sustain relationships and that we are completely off the rails, it often scares people away," says Minala.

The illness is often stigmatized, with their symptoms trivialised, invalidated or misdiagnosed, even by professionals.

The Hazards of Misdiagnosis

And it's not just regular folks, unless they have a proper understanding of what the illness and all its nuances, even professionals can unwittingly add to the toxic cycle.

Maheema and Milana speak of their own experience with misdiagnosis and the subsequent impact that had on their health.

“One therapist I had—a really experienced reputed professional—dismissed all my symptoms as petulance. He said I was acting like a five year old, and it was so invalidating.”
Milana Prakash

"This coming from a mental health practitioner can be immensely traumatic," she adds.

Milana goes on to talk about how one psychiatrist diagnosed her with schizoaffective disorder based on a Rorschach's test and medicated for it before she was correctly diagnosed with bipolar disorder and Borderline personality disorder.

In Milana's case what the misdiagnosis caused was a disorienting sense of self.

But for Maheema, the consequence of being given wrong medication was her symptoms getting "worse and worse until it lead to a complete breakdown."

<div class="paragraphs"><p>BPD can be a lonely journey but having a community, even a virtual one, can help immensely.</p></div>

BPD can be a lonely journey but having a community, even a virtual one, can help immensely.

(Photo: iStock)

BPD Humans: An Ecosystem of Support

For both Maheema and Milana self acceptance started with educating and sensitising themselves about their condition, and then education those around them.

And now, with BPD Humans—India’s first community for people experiencing Borderline Personality Disorder— they're making it easier for others with the diagnosis to do the same.

Because of the way BPD can affect relationships and scare people off, it can be an isolating and lonely journey.

"And that's why we wanted to create this community where we could provide each other solidarity and be united by our common diagnosis," says Milana.

With this group they have two goals, to reach out to those who have been diagnosed with BPD to provide them with support and a community, and the second is to raise awareness about the disorder.

They want to create an ecosystem where fellow BPD patients can support each other, and also get help from professionals without judgement and misguidance.

BPD Humans is their effort to make people with Borderline Personality disorder not be ashamed of their diagnosis and not be buried under the weight of it.

“You know how cancer survivors wear their victory over the disease with pride? We’d like people with BPD to feel the same type of pride about surviving this horrid illness everyday.”
Milana Prakash

Now a network of over 4000 people from around the world, BPD Humans started with just these two.

Maheema remembers the first ever BPD posts they uploaded on their respective Instagram accounts.

"It was like a Q and A session for others with BPD, but no one asked anything. Mine was the only question on Malina's page, and hers was the only one on mine," she laughs. "That's when we knew we had to do more to to reach out to people."Maheema and Milana, two young girls from Mumbai started BPD Humans last year in May.

<div class="paragraphs"><p>Maheema and Milana, two young girls from Mumbai started BPD Humans last year in May.</p></div>

Maheema and Milana, two young girls from Mumbai started BPD Humans last year in May.

(Photo: Maheema and Milana)

Ebb and Flow

May—which happens to be borderline personality awareness month—is also BPD Humans' first birthday.

In light of both, BPD Humans is putting together a series of sessions to allow access to some of India’s leading mental health practitioners covering different facets of BPD—understanding what it is, how to manage it, different types of therapies that could help.

“Most of us have had some terrible experience or the other with therapists in the past and so with ‘Ebb and Flow’, we’ve been careful in terms of who we’re calling to speak.”
Milana Prakash

"It doesn't make sense to call someone, and they turn out to be invalidating or triggering," she says.

In line with their core principle of keeping mental health help accessible and affordable, all these sessions will be open internationally and free of cost.

But most of all the event is a token of gratitude to their community, and celebrating its strength.

It is also an extension of their group's objective to help others with BPD come together, and feel heard and validated.

BPD Can Be Immobilising...but It Doesn't Have to Be

"I was dysfunctional almost all of last year. In time, I have managed to grow," says Maheema.

"Today, I have managed to complete my graduation, give exams, assignments, do BPD Humans with Milana, pull off Ebb and Flow, give interviews for potential jobs all in one month along with being COVID-19 positive."

Both Milana and Maheema would like others with BPD to know that living with BPD is tough, yes. But it’s not impossible. You can get out of it.

"I have awful days even today, but I know it will pass, and I know I have support, and I don't have to be alone," says Maheema.

They aim to help others recognise their disorder, understand it, embrace it and not let it get in the way of life.

"Like in the case of other mental illnesses, one of the misconceptions associated with BPD is that it cannot be treated," says Dr Kamna Chhibber. "And that the diagnosis indicates that a person cannot be productive or that they cannot be in or maintain relationships at all.

“We can be empathetic, and have different likings. We can hold relationships and decide for ourselves. We can read and paint and dance and volunteer, do gardening, everything just as much as someone else can.”
Maheema Misra

(If you or someone you know suffers from a borderline personality disorder and would like to be a part of BPD Humans' community, you can find them here.)

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